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NASDDDS National Association of State Directors of Developmental Disability Services
Health and Welfare Review: Report and Self-Assessment
Incident Management Systems and Mortality Reporting in Select State
Intellectual/Developmental Disability Systems
Mary Lou Bourne, Mary Sowers, Laura Vegas
National Association of State Directors of Developmental Disabilities Services
November 2017
This report includes two sections. Part I describes the review process undertaken by NASDDDS during the spring and
early summer of 2017 for twelve state Intellectual/Developmental Disability Management systems, and the results and
recommendations subsequent to the review. Part II is a self-assessment tool, available to assist states to review and
assess the strength of strategies used in managing activities and utilizing information within their broad incident
management systems
PART I: THE REVIEW
Purpose of the Review
State Intellectual and Developmental Disability (I/DD) agencies take very seriously the obligation to assure the health
and well-being of citizens with I/DD who reside in their state. To meet this obligation, states use multiple approaches
to track, measure, and analyze the status of individual and collective health and well-being. More than a compliance
exercise, states have dedicated resources, designed procedures, and taken additional approaches towards protecting,
preventing and continuously monitoring for indicators of abuse, neglect or mistreatment of their citizens with intellectual
and developmental disabilities. In the spring of 2017, NASDDDS undertook a review of state I/DD agency incident
management practices with the intent of learning about current practice and identifying opportunities for shared
learning. The insight and understanding gained proved useful in identifying promising practices and developing a self-
assessment tool for use by state agencies. The resulting observations and self-assessment tool provide comparisons
through which states can appraise existing structures. The self-assessment tool is useful for states to assess the
thoroughness of the design and execution of the system in place for identifying, reporting, intervening, preventing and
responding to critical incidents within the publicly funded service systems.
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While this review focused on specific Medicaid 1915(c) Home and Community-Based Services (HCBS) waivers, the
underpinnings of a strong approach to incident management and follow up are translatable within other financing
mechanisms in use by a state for long-term services and supports. Not simply are these underpinnings translatable,
but it is also advisable for a state agency to consider applying them within other financing mechanisms. The 1915(c)
HCBS waivers have specific statutory assurances, related to health and welfare and service plan implementation, which
require states to have strong strategies for discovery, remediation and improvement of instances that pose harm to
individuals served. While other Medicaid authorities may have different statutory requirements, all HCBS authorities
require states to ensure quality of care and to implement mechanisms to ensure health and welfare, including 1915(i),
1915(k) and 1115 demonstrations. Implementation of a seamless system to assure the health and well-being of all
people with I/DD who depend on public systems of support is simply sound management practice.
Background
Section 1915(c) Home and Community-Based Services (HCBS) waivers have been in use by States since the early 1980s.
In 1995, use of HCBS surpassed use of institutional services by individuals with I/DD who were additionally eligible for
Medicaid. Today, nearly 800,000 individuals with I/DD receive supports and services through HCBS waivers across the
United States.1 Additional people receive HCBS other Medicaid and non-Medicaid authorities and funding streams.
In 2003, a series of issues arose that prompted national attention on the quality of HCBS across the country. In June of
2003, the Governmental Accountability Office (GAO – then General Accounting Office), issued a report, which had been
requested by Senator Charles Grassley, then Chairman of the U.S. Senate Finance Committee. The report identified a
number of systemic concerns, at the state and federal level, regarding quality of care and monitoring. The GAO
concluded that Center for Medicare and Medicaid (CMS) should strengthen the Federal government’s oversight of
HCBS programs.2 The concerns noted in the report were echoed by Senator Grassley and his colleague Senator Breaux
in a letter to then U.S. Health and Human Services Secretary Tommy Thompson. The report and the letter coupled to
provide an important driver for CMS to engage in a significant redesign of the manner in which it approves and oversees
HCBS programs nationally.
As a result of this attention, CMS engaged with states through the key state membership associations representing the
State Medicaid Directors, State I/DD Directors, and State Directors of Aging Services. This engagement resulted in both
a revised waiver application (providing greater detail on state strategies to operationalize and oversee HCBS) and a
revised approach to CMS oversight that moved to an evidence-based approach centered on the assurances included
in the 1915(c) statute. Ultimately, clarification of the cycle time for waiver applications and evidence reports, requests for
additional information and the performance measures states identified all came together as a comprehensive look at
health, safety and state processes to assure quality within HCBS. As recently as 2014, CMS modified reporting
requirements specifying four sub-assurances related to health and welfare, as well as making additional changes in
1 Larson, S.A., Eschenbacher, H.J., Anderson, L.L., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2017). In-home and
residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through
2014. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community
Integration. Access at https://risp.umn.edu/publications 2 https://www.finance.senate.gov/chairmans-news/grassley-on-poor-oversight-of-medicaid-waivers
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other areas of quality assurance. As the design and utilization of HCBS has grown and evolved over the years, so too
have the requirements for assuring health and wellbeing evolved.
Progress in the area of HCBS oversight continues to mature, with more states identifying meaningful approaches to
quality, beyond basic compliance, to spur positive outcomes for individuals served. Despite these efforts, questions
persist about the ability of state agencies to keep individuals free from all harm. The HHS Office of the Inspector General
(OIG), at the urging of Senator Christopher Murphy in a 2013 letter3 , has embarked on a multi-state review to
understand state processes to identify and prevent instances of abuse, neglect and exploitation in HCBS, specifically for
individuals with I/DD. OIG has since issued three reports4, each of which delineate shortcomings in state approaches
to identify and prevent critical incidents.
This recent context has prompted NASDDDS to undertake these efforts to identify strong state practices, replicable in
State I/DD programs across the country.
Method and Approach
Taking a fundamental approach to organize the tasks and responsibilities related to incident management, three
questions guided this review.
What does a state need to know?
How does a state know it?
What does a state do about what is known?
Twelve (12) states were purposefully sampled from a universe of all states with 1915c HCBS waivers for people with I/DD
to allow for diversity in geography and level of organization of their case management systems (delivered through
independent agencies, local government agencies or the state agency). Among the sample, five (41.7%) states were
from the Midwest, two (16.7%) from the northeast, three (25%) from the south, and two (16.7%) from the west.
Five (5) of the states have case management/service coordination offered through separate, conflict free
agencies (not government employees); four (4) of the states use their own state employees for case
management; and Three (3) states utilize local governmental agencies for the delivery of case
management/service coordination.
NASDDDS’ utilized a three-stage review process in these efforts. Review, analysis, and comparison of publicly
available documents occurred first, including state statutes, regulations, policies, forms, training material,
guidance documents and the approved Appendix G from each HCBS waiver application in the state. The
second step included targeted discussions of implementation practices with state staff. The third and final step
included a comparison of policies and sub-regulatory5 tools with actual operational practices. To guide the
review process a tool was devised, comprised of elements from the CMS Instructions, Technical Guide and Review
Criteria for 1915(c) Home and Community-Based Waiver Applications version 3.5, and specific guidance on the
3 Senator Murphy letter to Daniel Levinson, HHS OIG, March 4, 2013 (see attachment A) 4 https://oig.hhs.gov/oas/reports/region1/11400002.pdf; https://oig.hhs.gov/oas/reports/region1/11400008.pdf;
https://oig.hhs.gov/oas/reports/region1/11600001.pdf
5 Throughout this document, reference to sub-regulatory documents include policy, guidance and interpretation documents,
procedures, operations manuals, and additional state agency documentation which provides direction to the field
THREE QUESTIONS
TO ANSWER:
1. What does
the state agency
need to know?
2. How does
the state
agency know?
3. What does
the state agency
do about what
is known?
4
HCBS Waiver application Appendix G instructions. Six broad domains organized the initial review elements, including
definitions, training, reporting requirements, response to reports, system oversight, and mortality review.
The first level of review consisted of collection and review of publically available documents from each of the twelve
states, including:
1. State statute
2. State regulations
3. Sub-regulatory documentation including policy, procedures, operations manuals, and guidelines
as appropriate.
4. Approved 1915(c) Waiver applications, Appendix G
5. Other relevant documents produced by the state including
a. Training materials for mandatory reporters and key stakeholders
b. Materials explaining incident management systems for people with disabilities and their
families
c. Documents describing the state’s efforts to assure health and welfare
Following the document review and comparison, analysis of the results determined the degree of consistency and
alignment across documents. The analysis included a rating of the following conditions:
a) Element demonstrates agreement across all documents
b) Element present in the state’s statute, regulatory/sub-regulatory documents but not in the waiver application
c) Element present in the waiver application but not in statute or regulatory/sub-regulatory documentation
d) Element not present in either statute, regulatory/sub-regulatory documents or the waiver application
e) Elements present, with significant differences in language between the statute, regulatory/sub-regulatory
documents and the waiver application.
Analysis included overall rates for each dimension by element, aggregated domains, and de-identified states.
Composite scores were created for each element, domain, and state. It is important to note the review served as an
inventory of the presence or absence of certain elements as opposed to an assessment of the quality of each element
and their relationships to outcomes. The purpose of the analyses was to illuminate patterns and not intended to provide
diagnostics.
Comparison of statute, regulations and sub-regulatory documents with information contained in Appendix G of the
state’s waiver application(s) was a core activity of the analysis. Consistency and alignment between the state’s HCBS
waiver application and additional regulatory or sub-regulatory documents resulted in identification of a stronger
foundation for critical incident monitoring. The higher the number of consistent elements, the stronger the foundation.
Conversely, elements identified in waiver policy not found within a state’s regulatory or sub-regulatory documents,
could suggest inconsistency in the foundation of the incident management system and potentially contribute to
diminished understanding among the responsible parties and therefore lead to a lack of implementation. Such
occurrences suggest a potential vulnerability for a state’s I/DD system. The analysis did not find Identification of a
higher presence of detail in sub-regulatory documents as compared to the level of detail found in a state’s waiver
Appendix G document to be an indication of either a strong or weak foundation for the Incident Management system.
SIX DOMAINS
GUIDED THE
REVIEW:
1. Definitions
2. Training
3. Report
requirements
4. Response to
reports
5. System
oversight
6. Mortality
review
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As a result of the initial analysis, consolidation of domains and elements occurred, resulting in four overarching domains
and twenty-four elements. (Table 1).
TABLE 1: FINAL DOMAINS AND RELATED ELEMENTS
Domains Elements
Definitions
1) Definitions for critical incidents
2) Abuse
3) Neglect
4) Unexplained/unexpected death
5) Substantiated definition
6) Unsubstantiated definition
How do you know?
1) Responsibility of initiating reports
2) Provider Reporting
3) State/county reporting
4) Timeline for reporting
5) Training of staff
6) Training of participants and family
7) Clear method of reporting (phone, paper, electronic)
8) Electronic reporting system
9) Clear factors requiring investigation
10) Responsibility of CI system oversight
What do you do?
1) Follow up procedures
2) Letting the individual and family know
3) Timeline to end investigation
Quality monitoring and trend analysis
1) Trending of aggregate data at state/county level
2) Larger quality council review
3) Requirements for providers' monitoring, use and/or review of their performance data
4) Frequency of trend analysis
5) Mortality-specific review committee/counsel
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Following document review, comparison and analysis, NASDDDS conducted interviews with key state officials involved
in the incident management system. The purpose of the conversations with staff was to discuss the results of the paper
review and gain further clarity on state practices including learning about actual practice in relation to policy and
regulation. The conversations with state officials included potential gaps and opportunities for system augmentation.
The discussions with state experts provided the opportunity to identify emerging best practices and additional
information regarding:
Examples when incident management systems worked well
Systemic changes made as a result of incident data to prevent re-occurrence
Processes for identifying and addressing possible under reporting
Use of Medicaid utilization/claims data for ER visits and hospitalizations in analysis of, or to cross check against,
incident reports
Results of the review
Observations
Taking into consideration the learning that emerged from both the document comparison, analysis and review activity
and the conversations about actual practice, NASDDDS observed commonalities and unique practices, which could be
useful for state I/DD agencies interested in assessing their own Incident Management system. Summary observations,
organized by general headings, follow. These observations do not represent 100% of observations noted, but they do
include those which appeared in several states or which provide insight to consistent messages heard to varying degrees
across the sample states. Discussions with states revealed a number of similar practices and provided the details of a
state’s engagement with the broader system. It was evident that while policy and regulation drove some of the actions
of state personnel, many of their routine activities have developed through collective experience over years. Common
management practices used by states demonstrate the presence of a sense of urgency necessary to resolve follow up
and investigative activities within individual reports as needed. State personnel often directly engage in the resolution
of individual reports. Most states directly communicate with local agencies, providers and advocacy agencies with a
frequency and clarity that relays this sense of urgency. The same sense of urgency was not evident when inquiring
about actions applied to an aggregated understanding of incident management, and approaching the aggregated
data in a manner focused on overall system improvement.
Multiple Agencies.
Most state I/DD agencies must engage with multiple external agencies for identification and reporting activities.
Depending on state statute, the principal state agency responsible for administering and often receiving reports of
suspected abuse, neglect or exploitation of vulnerable adults, may be outside of the I/DD program office. Multiple
states noted that they have routine involvement of the state Attorney General’s office, the Office of the Inspector
General and /or the Office of Aging or Children and families. With these multiple reporting doorways, the potential
exists for confusion and miscommunication, with the potential for differently identified pools of mandated reporters.
The complexity of reporting extends further when the reporting requirements vary by type of incident or age of the
individual involved. For example, reporting of restraints might occur through one channel via state statute, while
medication errors require reporting through a different channel (Medicaid office, or the Health Department). States
must also account for obligations to protect the confidential nature of the information, and compliance with the state’s
procedures related to the Health Insurance Portability and Accountability Act of 1996 and, in some instances, the state’s own
privacy laws. The level of complexity within a state’s larger governance structure impacts the potential for over-emphasis
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of reporting and paperwork, and the risk of reports falling through the cracks through assuming a different system will
respond. While it is necessary for most states, due to their size or geographic spread, to rely on local agencies or
partners for monitoring of reporting, investigating and follow up activities, the state has the final responsibility to assure
the integrity of the response (including investigations), particularly when completed at the local level. Investigations of
a critical event, for example, must be carried out with integrity, assuring there is no intentional or unintentional
compromise of the investigation results. State procedures and guidance documents provide key opportunity to
reinforce the need for investigative integrity.
Agile Policies, Training and Guidance
One potential system vulnerability in a number of states has occurred when a state’s policy, procedure or regulation is
in place, it is considered final and without need for review and updating. Some states, however, have begun to
approach regulatory or sub-regulatory review with the view that such regulations are dynamic and need frequent
adjustments to keep up with changing environments and expectations. Undertaking an agile approach to policy poses
challenges to alignment when multiple documents and artifacts of the bureaucracy are present. Simply keeping all
documents up-to-date, and assuring sufficient notification, training and communication with the field when making
changes, requires significant coordination and investment of time. However, it is important to note the presence of
operational manuals describing the details of expected actions among all stakeholders appears to increase the
likelihood of implementation at the field level. Generally, states with effective practices have an approach to system
management that relies on a multi-level strategy. This strategy reflects the foundational anchor and longevity of statute,
the important role of regulations to set broad program requirements, and the use of manuals and policies to set forth
operational details, which can be key tools in reflecting emerging priorities or changing operational imperatives (still
within alignment of the statute an regulations). Finally, states have the obligation to ensure that language in Appendix
G: Participant Safeguards Appendix G-1: Response to Critical Events or Incidents of the 1915 c HCBS waiver applications
support and align with state statute and regulatory language.
Equal Emphasis on Action
State agency staff demonstrate awareness of the constant need to balance policy, regulation and paper with the actions
and activities that assure health and welfare and emphasize support for intervention following a potentially traumatic
event. It is easy to slip towards an overemphasis on paperwork and reporting, and reinforce a message that compliance
with paperwork requirements supersedes the importance of taking action to assure the response taken meets the
effected person’s needs. State staff consistently balance their messages to local agencies, where applicable, and other
partners in program operations with both the requirements for accurate and timely reporting, and conveying clear
priorities for the response and follow up actions taken. It is tempting for monitoring agencies to equate forms,
documents and reports with assurances of both quality and safety. However, state DD agency staff recognize the
imperative to place equal emphasis on the analysis of data (both individual and aggregated) and actions needed to
address factors which challenge the system’s ability to meet high quality standards for health and safety.
Definitions and Requirements
Definitions of reportable incidents, timeliness and reporting elements must be sufficiently clear to avoid ambiguity while
also avoiding over-proscription. States want to assure policies and sub-regulatory guidance do not include gaps in the
definitions of key terms that drive decisions or actions. Terms such as substantiated or unsubstantiated claims and
unexplained or unexpected events lead the responsible staff to take particular action, and therefore must be
unambiguous. It is important for states to find the balance in their documentation and reporting requirements so that
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they do not cause inadvertent over or under-reporting, both of which can impair system efficacy. Experienced state
managers understand the importance of engaging with stakeholders, listening to partner agencies and continuously
monitoring the interpretations of field staff to maintain the delicate balance. State managers play a key role in assuring
the weight of reporting (both initial and follow up reports) remains commensurate with the potential impact of the
incident. If reporting requirements become a high burden, out of sync with the severity of the incident, providers may
perceive the requirements as routine paperwork without value towards assuring the safety or well-being of the people
they support. For example, any use of first aid requiring Band-Aids, use of topical creams, etc., should not require a full
report to the state. Such burden can also create a paradox in which the distraction of frequent reporting makes it
more likely staff will overlook a significant event. Furthermore, creating such a high burden of reporting that providers
begin to limit the opportunities of people they support to engage in new learning experiences is of high concern to
many states.
Person Centered Planning, Risk and Privacy
Recent CMS regulations on person centered planning requires states to include risk planning within individual service
plans. Several states identified steps needed to verify the actions addressed in a person’s plan when investigating the
follow up actions taken by a provider or other responsible party. Person centered plans should describe what the
person and their support team have agreed is a reasonable risk, linked to an identified outcome, and who has accepted
responsibility for the risk. A strong link exists between reasonable risk, effective service planning and potential harm.
The number of potential scenarios could be equal to the number of people desiring to learn something new.
One such example may be someone who is learning to use public transportation to gain more independence in his or
her life, but gets off at the wrong bus stop. In most states, it is likely that a person missing for more than two hours is
a reportable incident. Through the incident follow up, an investigation into this particular individual’s person-centered
plan would reveal that the risk of being temporarily lost was acceptable because of supports identified by the clinical
team to assure communication, and strategies to use the occurrence as an opportunity for growth and learning. In the
absence of this research into the person-centered strategies, a system could potentially respond by limiting the access
to public transportation, having a more negative impact in the person’s life than the incident itself. The need for publicly
funded support does not equate to foregoing all decision making related to taking reasonable risks. Unfortunately, in
the interest of assuring health and safety, some public agencies may effectuate policies which convey a message or a
climate of zero tolerance for risk. These policies may produce unintended consequences that suppress opportunities
for growth and learning that come from people successfully navigating through situations that pose reasonable risk.
Person centered practice must describe the type and amount of risk each individual is capable and willing to assume,
so that the inadvertent consequence of a robust incident management system is not an overly rigid, restrictive
organizational culture in which avoiding risk and assuring complete safety overcomes a person’s ability to learn, grow
and take on more and more self-responsibility. The person-centered planning process and HCBS services delivered
should not place unnecessary restrictions on the freedom and choices of persons supported, nor prevent opportunities
for persons supported to achieve increased independence and autonomy as they participate fully in community life.
Family and Self Advocate Knowledge/Awareness
Engaging Families and People who receive services in the development of policy and guidance for the incident
management system occurs in most states. Keeping the person and their family or guardian informed at the reporting,
investigating and resolving phases of any incident is an area that poses challenges for some states. States need staff
with the skills of both honoring concerns for privacy while at the same time assuring transparent recognition of gaps in
the quality of service delivery while speaking with families. At a broader and more fundamental level, states must make
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available to people with IDD and their families information on what, how and when to report activities that may cause
harm. This information must be easily understood, in simple and plain language, widely and frequently distributed,
using multiple media. The development of such information can also shed light on whether the state’s reporting
mechanisms are sufficiently accessible and easy to use.
Additionally, and of equal importance in working with families, states must assure the total incident management system
is designed with an understanding of the diverse cultural backgrounds of families served within the state. For example,
the structure for reporting responding, following-up and investigating incidents must have built in sensitivity to the
culturally diverse experiences of families. Staff responsible for monitoring and investigating incidents must demonstrate
the competencies necessary to understand the culturally diverse interactions among families. These skills help to assure
the staff do not misinterpret acceptable interactions of one person’s culture and mistakenly determine the actions
confirm abuse or neglect. Such actions can discourage families of diverse cultures from accepting services in their
home.
As individuals are increasingly engaging in community activities, and as more individuals are living in their own homes
or in the homes of their families, states must devise nimble, yet nuanced approaches to incident reporting to reflect the
multiplicity of service settings and individual levels of autonomy. As noted above, one-sized approaches may
inadvertently stifle individual growth and opportunities and may have unintended systemic impacts. Incident
management and reporting when family is the alleged instigator of the incident involves boundaries, which are similar
yet different from a provider agency (either publicly or privately operated). The definition of neglect, for example, may
be very different when a family member falls asleep from exhaustion while their son or daughter with a disability is
awake, as compared with a staff member receiving pay to provide supervision who falls asleep during their work hours.
States may need to examine their policies and their training curriculum to determine if clear guidance is available for
staff in the field who must make this judgment. In addition, when families are the subject of incident investigations,
additional state agencies may be involved in the investigation and any associated follow-up activities.
Meaningful Training
Every state participating in the discussions expressed the importance of a continuous and effective incident
management training model. There are two distinct areas of information to convey in a state’s training model. The first
is knowledge and information about what, to whom and when reports are required. The second area is of an operational
nature, to address the responsibilities of providers, case managers, and local and state government representatives to
respond, follow up and investigate incidents as appropriate. Those who design state training systems must take into
account the necessary differences in the information, materials and delivery methods needed for training of state
personnel, provider agencies, and local administrative agencies and self-advocates or families. Each state faces the
decision of whether to address a provider’s responsibility for data analysis, trending and resulting quality improvement
projects through performance standards, or by confirming competencies through state-provided training and
competency demonstration. Many states recognize a need to improve, expand, or make user-friendly the training
available for families and self-advocates in all aspects of their incident management system.
Information Technology
Technology offers a potential solution to several aspects of the challenges states face in the implementation of an
effective Incident Management system. IT systems available statewide can enhance the compilation, submission and
aggregation of reports in real time. Electronic reporting systems can also prompt for the elements required in each
type of report, thus improving completeness. Easy access to reporting mechanisms by all mandated reporters in the
community benefits from the use of online reporting tools available in IT systems. An effective statewide IT system can
also assist with tracking the timeliness of both initial reports and follow-up /response activities. While a sophisticated
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system, available statewide, which incorporates automatic alerts and notifications can assist with the logistics of
managing the system, it will not guarantee appropriateness of the response, nor does it provide the insight needed to
recognize opportunities for improving process or policy at a provider or government level. However, streamlining the
logistics of reporting and communicating can create some relief so that staff resources are not fully dedicated to simply
tracking and verifying accuracy, but rather might be dedicated more fully to the important activities of prevention and
improvement. The presence of an accurate data warehouse can also contribute to the analysis and interpretation of
aggregate data, through which recognition of patterns and trends may occur more readily. While the challenges of
variations in data systems is not insurmountable, states recognize the need for additional support in the design of highly
secure IT systems with multi-portal access, which can access data systems operated by several state agencies. While
these sophisticated IT systems exist in a handful of states, most states need a significant investment in resources to
design, construct and implement this level of technology. There is a growing imperative for states to have effective
data management practices for their incident management policies, and, given its relationship to the proper and
efficient administration of the state plan, should engage with CMS to explore federal financial participation in its
purchase/development and maintenance.
Mortality Review
To further ensure the health and welfare of people in its service delivery system, states should undertake the
development and maintenance of a mortality review system that is firmly anchored in state statute or regulation.
Mortalities are a subset of all reportable incidents in a state. The methods states use to identify when deaths occur, to
triage them with regard to investigation and to devise the resultant systemic responses, as warranted, are essential to
all individuals in the system. Many states support an independent review board or council to oversee both the accuracy
and appropriateness of individual mortality reports and aggregated reports of trends and patterns in the cause of death
or the location or type of provider. Such objective review of the data is a critical source of information for the ongoing
assurance of the health and wellbeing of people served. Several states noted the importance of accuracy in the initial
reporting of deaths among local agencies responsible for determining cause of death and subsequent reporting of the
cause through issuance of a death certificate. These mortality review groups provide a resource to look at both the
individual and the aggregate information, and determine if a more robust response is appropriate from the state
agency.
Promising Practices
Reporting Requirements: Definitions, Timeframes and Reporting Methodologies
All states in the sample have systems available for the reporting of incidents by providers, families, people receiving
services and other mandated reporters. However, some of the states reviewed have systems in place for receiving,
storing and managing the reports in a real time manner that is noteworthy.
For one sample state, the State Office of Human rights and the Office of State Inspector General, along with all local
Adult Protective Services agencies (located in each county) have access to a statewide data system. This system
provides real time data reporting and tracking and can allow for immediate notification of state or local offices when
allegations of abuse, neglect or serious injury occur. The data warehouse associated with the system creates reports
on timeliness and responses taken for reports sorted by type and cause.
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States shared various approaches to triaging daily incident reports. In one small state, the use of a daily review process
to both triage response to reported incidents and quickly identify any potential emerging trends facilitates quick action,
as appropriate. While the resources may not be available for states that serve a larger number of people in their system,
larger states could replicate the process on a local level. For example, in another larger state DD system, routing of
each reported incident to a central location happens daily for review and triage by key staff. Triage includes notifying
external parties such as local administrative agencies and law enforcement, child protective services, etc. as appropriate
and making referrals to other DD agency staff for immediate follow-up if warranted.
Responsibility for Follow-Up
All of the states in the sample have various processes to ensure immediate protection from further potential harm for
people for whom an incident report has been filed and people who may have been collaterally involved based upon
proximity or circumstance. Some of the states reviewed have implemented formal practices that could be considered
promising.
One state requires an “Immediate Action and Safety Plan” to be submitted with each reportable incident. The purpose
of the plan is to inform the state DD agency of actions taken to ensure the immediate and ongoing safety of the person
for whom the incident was filed as well as for any people receiving services who may be impacted by the incident.
Another state requires “Planned health and Welfare Actions” to accompany every incident report. The Planned Health
and Welfare Actions are steps taken by the provider, the person, family member, and legal representative and/or State
DD agency staff to promote the safety and well-being of the individual(s) involved in the incident.
Two states in the sample have good practice regarding investigatory fidelity. Both states have strong KSAs (knowledge,
skills, and abilities) requirements for the position of investigator to ensure fidelity to generally accepted investigative
procedures.
Case managers play a vital role in the critical incident system in one state. They are required to pull together support
team members upon notification of a substantiated investigation. In this state, the case manager and the support team
review the recommendations and results of the investigation to determine if changes are needed in the Person Centered
Plan. If plan needs amended, the case manager reviews the need with the person and their support team and makes
appropriate changes as needed.
In order to ensure that the person with IDD and their family was satisfied with the outcome of an investigation of
allegation of abuse or neglect, one state agency involves the case managers. Once the investigation is deemed “closed”,
the case manager has 30 days to complete a follow up contact to verify satisfaction. State officials document the
contact as part of the investigation record for trending and analyzing on a periodic basis. In addition, if there is not
satisfaction with the investigation outcome and recommendations, the case manager works with the person until
satisfaction is reached.
Another state agency involves their quality assurance teams to ensure there was adequate follow-up on investigation
recommendations by following up with individual providers within 120 days of investigation closure to ensure
recommendations were followed and appropriate.
Some states have formal processes for the person with IDD and/or their family and legal representative to appeal or
dispute the findings of any incident “investigation” process. The request for review is received by the State DD agency
and follow-up is conducted with the person/family to ensure satisfaction with the recommendations and services and
supports moving forward.
Targeted and Broad System Improvement Initiatives
States use data collected from the critical incident and mortality review process in a variety of ways in order to target
areas for system improvements that should reduce the likelihood of future untoward incidents. One state publishes
12
and distributes a Well Informed newsletter used to promote health and welfare of people with I/DD in their state by
spotlighting issues noted through incident management and mortality review data. Another state developed training
modules for direct support staff to help them identify specific health concerns identified as top reasons for mortality in
order to support people to live long healthy lives.
One state has begun the process of utilizing data external to its incident management reporting database in order to
look for opportunities for further training or quality improvement activities. The state agency reviews Medicaid
utilization data for emergency room visit claims in a retrospective fashion. The reviews of ER visit claims set a context
to ask questions and propose potential areas for improvement of the incident management system for that state.
Based on trends identified in incident data for one state, the relationship with local and state law enforcement
organizations have grown stronger. The State DD agency developed training specifically for local and statewide law
enforcement agencies that includes a strong presence of self-advocates during training. The purpose of the training is
to help law enforcement officials become more familiar with the state DD system and with how to interact with people
with I/DD. The training is provided in person by State personnel and self-advocates in order to provide opportunity
for questions and dialogue.
Education, Communication and Partnerships
Interviews with state officials revealed some promising practices involving self-advocates in the incident management
process. One state produced videos available online in order to ensure people with IDD had multiple training
environments available in which to learn about abuse and neglect and how to protect themselves. The videos feature
people with IDD explaining the definitions of abuse, feeling safe at work and at home and stories of people who have
been the victims of abuse.
Some states in the sample devoted resources in a unique way to ensure that people with I/DD and their families had a
full understanding of the incident management system, above the minimum expectations that individuals and families
receive information. One state agency developed a multi-focused training for families and self-advocates as initial
reporters. Through a collaborative effort with a UCEDD and local domestic violence and rape crisis centers, the state
is developing curriculum for use in local communities to strengthen the reporting routes and to improve the response
for victims of abuse or neglect. In particular, the state provides support for local District Attorney Victim Witness offices
to learn about support for people with I/DD.
Ensuring people with IDD are actively involved in the oversight process of the incident management system and
mortality review system is an approach used by one state to ensure quality. People who use services serve in an official
capacity and provide feedback regarding aggregate incident data, trending and analysis. In addition, a person with
IDD is part of the external review committee for mortality review recommendations in order to ensure the perspective
of people with disabilities is represented in all actions taken by the group.
Mortality Review Processes
All states in the sample had a dedicated approach to review cases of mortality within the system that was anchored in
statute or, minimally, in regulation. States in the sample approached the mortality review process in varying ways. In
addition, states used the knowledge gleaned from the reviews to inform their systems in different ways.
One of the states reviewed in the sample used a two-tiered approach to mortality review. They used an internal review
committee with State DD agency staff, providers and self-advocates. Also used a committee called the Fatality Review
Committee chaired jointly by the Chief Medical Examiner and a DD Agency official to review cases requiring a different
level of medical expertise.
Using trends identified from the results of mortality reviews, some states developed preventative measures for use by
the provider community as well as for families of people with I/DD. One state publishes Health and Welfare alerts on
13
a monthly basis highlighting important issues such as preventing falls, preventing pneumonia and preventing choking.
Another state developed training specifically for direct support professionals titled: Falls Prevention and Mealtime
Challenges.
Recommended steps for State I/DD agencies
At a systems level, state agencies must assure the presence of practices addressing the three fundamental questions
clearly, consistently, and accurately.
What does a state need to know?
How does a state know it?
What does a state do about what they know?
States may consider undertaking a full assessment of their existing home and community based rules, regulations,
policy documents, operations manuals, communication methods, waiver documents and training methods for
consistency and completeness. Beyond paper, however, states must assure their staff have the knowledge and skill
necessary to exercise judgment and swift decision making when incidents occur. States want to assure staff have the
advanced skills necessary to work with aggregated information. Such skills include development of routine review
procedures, accurate analysis and interpretation of the data. The presence of these capabilities increase the likelihood
of identifying significant trends and patterns that may reveal the presence of underlying contributing factors.
Additionally, states need staff with experience in root cause analysis, who have access to data analysis tools and have
the skill to work collaboratively across multiple agencies. Leadership skills to guide and direct the collaboration increase
the robust application of comprehensive practices. Identifying the (sometimes elusive) contributing factors is key to
implementation of prevention, the ultimate goal of data analysis. Keeping adequate balance on the underlying
structure, which is demonstrated on paper, and the active implementation through engagement, will help a state move
towards a robust system focused on prevention and proactive engagement, and away from a system based solely on
reactionary response.
To begin the process, states may want to explore the self- assessment tool attached to this review. The tool’s design
provides a state I/DD agency with an understanding of what currently exists, and will give a view of the gaps in the
existing system. When reviewed with leadership or senior management teams, the results can provide keen insight into
the opportunities for improving and enhancing the existing structure for assuring the health, safety and well-being of
the people supported by the I/DD system.
This document was written by Mary Lou Bourne, Mary Sowers and Laura Vegas, NASDDDS staff, in August 2017, with assistance on
the analysis of public documents completed by Morgan Shields, PhD Student and NIAAA Fellow, Brandeis University. For further
information, or technical assistance on the use of the self-assessment tool, please contact us at [email protected]
14
PART II STATE SELF-ASSESSMENT TOOL
NASDDDS National Association of State Directors of Developmental Disabilities Services
Discovery, Remediation, Prevention and Systemic Improvement
Strategies Related to Abuse, Neglect and Exploitation
A State Self-Assessment
This tool is intended to assist states to review and
assess their own strategies to identify, resolve and
prevent instances of abuse, neglect and exploitation.
Multiple areas with gaps in execution may reveal
potential system vulnerabilities that would be important
to strengthen. States with successful strategies strike a
necessary balance that ensures health and welfare
while affording individuals the opportunity to exercise
maximum autonomy, choice and opportunities for
meaningful community integration.
This tool is for state use to gauge its system attributes
and performance in areas key to effective incident
management and follow up. This tool has not been
reviewed or approved by CMS or other Federal
governing bodies.
Using a scale of 1-5
5 = the state has fully executed this item
4 = the state has partially executed this item
3 = the state has begun to execute this item
2 = the state has discussed but has not acted upon this
item
1 = the state cannot execute this item [include
comments describing circumstances]
For items not fully executed within your state (score less
than 5 in any individual item), NASDDDS recommends
including comments describing areas of needed
improvement or circumstances contributing to
implementation challenges. In any specific item with a
score of three (3) or lower, the state should take
immediate steps to resolve. In addition to reviewing
the item-by-item scores, each section contains a
potential maximum score. State sectional composite
scores of less than 86% of total potential composite
scores in any broad category indicate a potential
serious vulnerability and should prompt a state to
initiate strategies to quickly close the gaps in this area.
This document is organized based on the following
broad topic areas:
- Do people know what to report?
- Do people know who should report?
- Do people know how and where to report?
- Do people know what happens once a report is
submitted?
- How does the state analyze and trend information
on all incident reports?
- How does the state develop targeted and broad
system improvement initiatives?
- How does the state educate and communicate with
partners and stakeholders?
- How does the state manage mortality review
processes?
15
6 Version 3.5. Note: These are broad terms and states may define these terms differently, providing greater specificity on the types
of instances that may require reporting. For example, states may note that serious injuries include those that require intervention
by a licensed medical professional. This list has also been augmented by authors.
Do people know what to report? (7 items)
POINTS 5 4 3 2 1 Comments
As required in CMS’ Technical Guide6, the state has clear,
consistent and easily understood definitions of the following
terms7 (at a minimum):
(a) abuse and neglect as defined by the state;
(b) the unauthorized use of restraint, seclusion or restrictive
interventions;
(c) serious injuries that require medical intervention and/or
result in hospitalization;
(d) criminal victimization;
(e) death (unexplained, unanticipated, and anticipated);
(f) financial exploitation;
(g) environmental events requiring movement from
primary residence (fires, flood, etc.)
(h) medication errors; and,
(i) other incidents or events that involve harm or risk of
harm to a participant
The state has defined in policy what must be reported as abuse
and neglect.
The state has defined in policy what must be reported as critical
incident other than abuse and neglect.
The state clearly describes the differentiating factors between
incidents of varying degrees of severity, particularly when
resulting in different reporting or follow up procedures.
Definitions of abuse, neglect and critical incidents are aligned
across statute, policy approved waiver documents and contracts,
(consistency in definitions and applicability, timeframes,
responsible parties, process, etc.).
The state has established regular periods of review to ensure
that all of the governing documents and responsible roles
remain contemporary and in alignment (annually or biannually).
The state has identified the personnel (positions) who will be
responsible to ensure that all of the governing documents and
responsible roles remain contemporary and in alignment
(annually or biannually).
Total Potential Composite Score 35
State’s Total Composite Score (Sum of all Items)
16
Do people know who should report? (13 items)
POINTS 5 4 3 2 1 Comments
Incident reporting and management expectations, including
reporting roles and duties, are in state statute.
Incident reporting and management expectations, including
reporting roles and duties, are in regulations.
Incident reporting and management expectations are described
(in accordance with CMS waiver/state plan review criteria) in the
state’s approved Medicaid waiver/state plan documents.
Incident reporting and management expectations are described
in state policies, procedure manuals and related operational
documents.
Provider enrollment/program participation conditions include
compliance with incident reporting and management
expectations.
State agency policy and program staff are knowledgeable of
incident reporting and management expectations.
There is alignment and consistency across each governing
document in which the incident reporting and management
process is described specific to responsible parties, roles and
duties of reporting. (consistency in applicability, timeframes,
responsible parties, process, etc.)
The state has defined who is considered a mandatory reporter
for suspected abuse and neglect. At a minimum, this includes:
(a) medical practitioners,
(b) clinicians,
(c) law enforcement,
(d) state and local government officials,
(e) case management entities
(f) and Medicaid provider staff, including direct care staff
This may include: Any organization, agency or single individual,
who receives payment for the provision of services or supports
delivered to vulnerable adults when those services are paid for
through the State Medicaid.
The state has defined who is considered a mandatory reporter
for critical incidents. At a minimum this should include:
(a) case management entities
(b) and Medicaid provider staff, including direct care staff
7 For criteria consisting of multiple factors, apply 5 points only if ALL factors are executed; if some, not ALL are executed, score this
as one total item with 4 , 3, or 2 as applicable, using the comments section to indicate which factors need additional implementation
17
The state has defined the role of a mandatory (or required)
reporter for critical incidents other than abuse and neglect.
The state has provided information regarding mandatory
reporting on state web sites and other broad public sites.
The state has assured by policy, contract or training that all case
management, service providers and others responsible for
reporting abuse, neglect and critical incidents know of their
obligations and the method(s) by which they must submit key
information.
The state routinely and repeatedly provides understandable
information to individuals receiving services and their
families/support network on their obligations to report incidents
including suspected abuse and neglect.
Total Potential Composite Score 65
State’s Total Composite Score (Sum of all Items)
(Continued on next page)
18
Do people know how and where to report? (8 items)
POINTS 5 4 3 2 1 Comments
The state has identified the required information on any
incident report.
The state has made the incident reporting content easy to
understand and easy to provide to ensure accurate and timely
report submission.
The state has made the incident reporting mechanism/process
easy to use to ensure accurate and timely report submission.
The state has developed and implemented clear criteria for
reporting timeframes based on level of severity of the incident.
The state has developed clear criteria for reporting
methodology/ (ies) based on level of severity of the incident.
The state has identified key entities/personnel (locally or at the
state level) responsible and available to receive, review and
triage incident reports on a 24/7 basis.
The state has provided concrete information on reporting
protocols (for instance, when a DSP is reporter and report
should come straight to state rather than internal supervisor).
The state routinely and repeatedly provides understandable
information to individuals receiving services and their
families/support network on how and where to report incidents
including suspected abuse and neglect.
Total Potential Composite Score 40
State’s Total Composite Score (Sum of all Items)
19
Do people know what happens following report submission?
(18 items)
POINTS 5 4 3 2 1 Comments
State has guidelines on how long it takes from the date /time of
the report of the incident until a determination to investigate or
not is made
State has clearly described the specific steps required of providers
to assure the well-being of the alleged victim, anytime an
employee is the alleged perpetrator in an incident report.
The state communicates with family and the individual when an
incident report has been filed.
The state has developed consistent statewide criteria to triage all
incident reports by level of severity of the incident.
The state has established timeframes and methodology/ (ies) for
reporting all incidents that are sufficiently expedient to ensure
near immediate follow up.
Reports of incidents are made to a central repository/location
outside of a service provider.
The state has developed a reporting/follow up structure that is
tailored to the age of individual involved, types of services,
settings and providers in use in the state (i.e., paid family
caregivers versus facility-oriented provider-hired staff).
The state has included an expectation that incident follow-up will
include referencing the individual’s person-centered plan to
understand individual-specific considerations and risk
management strategies.
The state has strategies to assure the response to the incident
does not undermine agreements within the person-centered plan
in support of an individual’s desire to learn a new skill or engage
in a new experience.
The state has identified sufficient staff resources to carry out the
duties of incident management with fidelity and thoroughness.
The state has established clear criteria of which cases are referred
for criminal investigations and prosecution, including a clear
agreement with the state Medicaid fraud unit.
The state has established clear requirements for immediate
actions necessary to remove individuals from harm (inclusive of
both individuals for whom a report has been filed or individuals
who may be collaterally involved based upon proximity or
circumstance). Minimally, these requirements include identification
of:
- responsible party/(ies) for immediate action
20
- timeline and method of immediate action (e.g., within 3
hours of notification for reports of abuse, neglect or
exploitation)
- required reporting/documentation of actions taken and
timeframes for submission (including clarity of
instructions when differences exist between reports of
suspected abuse and reports of substantiated abuse)
The state has described, for each type of incident defined, the
procedure for investigation (as applicable), including:
- responsible party to conduct investigation/follow-up
- parameters of investigation and required documentation
- timeframes for initiation, updates and completion of
investigation (including communication protocols for all
involved parties)
- the required contents of all final investigative reports
- protocols for notification based on investigation findings
(i.e., law enforcement, licensing, etc.)
- methods and timeframes for keeping the individual(s)
and his/her family informed of status and outcome
The state procedures distinguish between criteria or
circumstances requiring follow up from those requiring formal
investigation.
The state has established protocols to ensure that individuals
conducting investigations are objective and without real or
potential conflicts of interest.
The state has established minimum knowledge, skills and abilities
(KSAs) of individuals conducting investigations to ensure fidelity to
generally accepted investigative procedures, and has processes to
ensure investigators have required knowledge (initially and
ongoing).
If the state allows/requires providers to conduct their own
investigations, there are stringent protocols in place for state
oversight, auditing and evidence tampering prevention, which
could include intimidation or undue pressure or influence of
reporters or other collateral informants.
The state has established protocols and memoranda of
understanding with partner agencies (law enforcement,
child/adult protective services, Medicaid fraud unit, others) to
ensure timely information sharing sufficient to understand the
outcome of any investigation undertaken by those entities in
relation to the reported incident.
Total Potential Composite Score 90
State’s Total Composite Score (Sum of all Items)
21
How does the state analyze and trend information on all
incident reports? (8 items)
POINTS 5 4 3 2 1 Comments
The state has an information management system that allows
for real-time/ efficient tracking of all submitted incident reports.
The state’s information management system is able to
aggregate, analyze and sort data and information to provide a
number of key vantage points, minimally:
(a) by individual served
(b) by provider
(c) by type of setting
(d) by time period (weekly, monthly, quarterly, annually)
(e) by incident type and severity
(f) by geographic location
(g) by case management entity
The state’s incident reporting mechanism/process enables data
aggregation and trend analysis.
The state’s information system permits real-time data
aggregation and reporting.
The state has identified key accountable parties/individuals to
review and analyze data and information at specified
periodicities (and any necessary knowledge, skills and abilities
related to those activities).
The state has established protocols for timely review of all
submitted incident data to identify issues requiring immediate
state-level intervention and to inform targeted or broad
systemic improvement efforts (i.e., dedicated daily team
briefings at local or state level, weekly data review strategies,
monthly or quarterly quality meetings, etc.).
The state has specifically identified incident data reports for
review at certain points in time to ascertain emerging trends
and patterns (for individuals, providers, locales, incident types,
etc.).
The state has established protocols for informing key system
contacts/partners on any trend identification.
Total Potential Composite Score 40
State’s Total Composite Score (Sum of all Items)
22
How does the state develop targeted and broad system improvement initiatives? (7 items)
POINTS 5 4 3 2 1 Comments
The state has established a body or bodies to inform processes
related to targeted and broad system improvement efforts in
response to data and information (i.e., local and/or statewide
internal quality committee).
The state has identified accountable parties for devising, leading
and coordinating improvement plans (at all system levels).
The state has established a protocol (and measurement
strategies) to test the efficacy of improvement interventions and
for strategy revisions as needed to achieve desired outcomes.
The state has developed reporting mechanisms at both
aggregate and individual level, which show trends- both positive
and negative- across time.
The state has designed and implemented strategies to gauge
the performance of key functions within the systems (targeted
audits, review of timely, accurate and complete data reporting,
other efforts).
The state establishes data analysis practices to compare the
information gained from the incident reporting information with
other key data sets (for example, using Medicaid claims data to
determine any unreported, injury-related emergency
department visits).
The state has process to review the overall incident management
system, to assure it is effective and balanced in regards to the
administrative requirements and the positive impact on the
services delivered.
Total Potential Composite Score 35
State’s Total Composite Score (Sum of all Items)
23
How does the state educate and communicate with partners and
stakeholders? (5 items)
POINTS 5 4 3 2 1 Comments
The state has tailored educational methods and materials which
describe the system for incident reporting and management
(including trend analysis and systemic improvements) for all
system stakeholders, minimally:
(a) individuals with disabilities
(b) family members/support networks
(c) provider agencies
(d) direct support professionals
(e) case managers
(f) state system staff/local partners
(g) all other mandatory reporters
The state has established communication strategies for sharing
information with its stakeholders and the public on methods to
detect and prevent the instances of abuse, neglect and
exploitation.
The state has a process in place to assure all procedures, all
training materials and media have been designed with an
understanding of culturally diverse populations and needs.
The state builds education, using multi-media methods, on
identifying issues, providing safe reporting opportunities and
strategies for empowerment into regular interactions with
individuals served.
The state shares with other key partners its processes, protocols
and expectations to maximize systemic cooperation and
coordination (i.e., law enforcement, child/adult protective
services, education, etc.).
Total Potential Composite Score 25
State’s Total Composite Score (Sum of all Items)
24
How does the state manage mortality review processes?
(6 items)
POINTS 5 4 3 2 1 Comments
The state has a dedicated approach to review cases of mortality
within the system that is included in statute (or, minimally, in
regulation).
The state has clear criteria and protocol for review, including
identification of any data shortcoming and clear expectations
for the role at the state level for systemic improvements when
needed (i.e., some states have routinely received incomplete or
inconclusive findings from chief medical examiner, hindering
root cause analysis or opportunities for prevention).
The state conducts routine review of death rates (numbers of
death per 1000 population is the most basic reporting option).
For greater accuracy in comparison year over year, age-
standardized mortality rates may be calculated.8
The state has established procedures for monitoring deaths by
cause of death, by residential categories, allowing for examining
patterns, as well as reviewing mortality rates in the context of
shifting residential settings, and devising systemic prevention of
future injury, accident, death, etc.
The state’s review efforts include a formal body, charged with
discussion and review of mortality data, which includes
individual members who are knowledgeable and informed of
the subject matter and inclusive of self-advocate and family
representatives.
The state has a comprehensive education plan for Mortality
review, particularly when carried out on the local or regional
level that includes Coroners or County Medical Examiners to
assure adequate understanding of death reporting
requirements, and disability-related fatalities.
Total Potential Composite Score 30
State’s Total Composite Score (Sum of all Items)
8 Note: The advantage of age-adjustment is to make sure that changes noted in mortality rates are not due to an underlying
change in the population, such as ageing of the population or an influx of younger people
25
Results: Record the actual number of points given to each major category above, and then
total the points for the full assessment and compare to the results below.
CATEGORIES Actual
Points
Potential
Points
Do people know what to report? (7 items) 35
Do people know who should report? (13 Items) 65
Do people know how and where to report? (8 Items) 40
Do people know what happens once a report is submitted? (18 Items) 90
How does the state analyze and trend information on all incident reports? (8 Items) 40
How does the State develop targeted and broad system improvement initiatives? (7
Items) 35
How does the State educate and communicate with partners and stakeholders? (5
Items) 25
How does the state manage mortality review processes? (6 Items) 30
Total 360
360 - 289 points The state’s incident management system addresses and includes most aspects of a strong,
comprehensive approach, and reveals few, if any, gaps in development
288 - 217 points The state’s incident management system includes many comprehensive practices and
demonstrates some areas in need of full execution or development.
216 - 145 points The state’s incident management system has begun to develop effective practices, and
provides multiple areas to enhance or expand either development or execution.
144 - 73 points The state’s incident management system includes a few strong practices and has many areas
that could benefit from further development or full execution.
72 - 0 points Most practices within the state’s incident management system provide opportunities for
development, clarification, and improved execution
26
ATTACHMENT A
Attachment A: Letter to Office of Inspector General from Senator Murphy
27
28
ATTACHMENT B Number of States with Each Element, by Domain and Dimension within documentation.
Higher is Better Neutral Lower is Better Lower is Better
Elements Category Policy Waiver
Significant
differences in
language
In waiver, not
policy
Critical Incident Definitions 12 12 7 0
Abuse Definitions 12 3 2 0
Neglect Definitions 12 3 1 0
Unexplained or unexpected death Definitions 5 2 0 1
Substantiated Definitions 6 3 0 2
Unsubstantiated Definitions 3 1 0 1
Average of Domain 8.3 4 1.7 0.7
Responsibility of initiating reports How do you know? 12 12 6 0
Provider Reporting How do you know? 4 2 0 1
State/county reporting How do you know? 12 12 4 0
Timeline for reporting How do you know? 11 12 2 1
Training of staff How do you know? 8 5 4 1
Training of participants and family How do you know? 3 12 2 9
Clear method of reporting (phone,
paper, electronic) How do you know? 10 11 4 2
Electronic reporting system How do you know? 7 7 0 2
Clear factors requiring investigation How do you know? 5 5 3 0
Responsibility of CI system oversight How do you know? 11 12 1 1
Average of Domain 8.3 9 2.6 1.7
Follow up procedures What do you do? 10 12 7 2
Letting the individual and family know What do you do? 8 9 4 4
Timeline to end investigation What do you do? 8 9 4 3
Average of Domain 8.7 10 5 3
29
Trending of aggregate data at
state/county level? Data monitoring 7 9 5 3
Larger Quality Council review Data monitoring 5 8 2 3
Req. for providers' monitoring, use
and/or review of their performance
data
Data monitoring 5 3 1 2
Frequency of trend analysis Data monitoring 4 8 2 5
Mortality-specific review
committee/counsel Data monitoring 3 4 0 2
Average of Dimension 4.8 6.4 2 3
Total Average 7.8 7.4 2.6 1.8
30
The National Association of State Directors of Developmental Disabilities Services
(NASDDDS) represents the nation's agencies in 50 states and the District of Columbia
providing services to children and adults with intellectual and developmental disabilities and
their families. NASDDDS promotes visionary leadership, systems innovation, and the
development of national policies that support home and community-based services for
individuals with disabilities and their families.
703-683-4202
nasddds.org
