Medicaid Home and Community-Based Waivers
CMS Should Encourage States to Conduct Mortality Reviews for Individuals with Developmental Disabilities Gao ID: GAO-08-529 May 23, 2008Deaths of individuals with developmental disabilities due to poor quality of care have been highlighted in the media. Prior GAO work has raised concerns about inadequate safeguards for such individuals receiving care through state Medicaid home and community-based services (HCBS) waivers. CMS approves and oversees these waivers. Safeguards include the review of, and follow-up action to, critical incidents--events that harm or have the potential to harm waiver beneficiaries. GAO was asked to examine the extent to which states (1) include, as a critical incident, deaths among individuals with developmental disabilities in waiver programs; (2) have basic components in place to review such deaths; and (3) have adopted additional components to review deaths. GAO interviewed state developmental disabilities agency officials and external stakeholders in 14 states, e-mailed a survey to 35 states and D.C., interviewed experts, and reviewed documents.
All 14 states whose officials GAO interviewed included death among individuals with developmental disabilities as a critical incident in their waiver programs. The developmental disabilities agencies in all 14 states required waiver service providers to report such deaths to the agencies. Consistent with CMS's expectation that states review critical incidents, nearly all states had processes in place to review these deaths. The extent to which states other than these 14 identified death as a critical incident has not been established. All but 1 of the 14 states included most of the six basic mortality review components identified as important by experts when reviewing deaths among individuals with developmental disabilities, but states varied somewhat in how they implemented components. For example, some states reviewed unexpected deaths only, while other states reviewed all deaths of individuals receiving Medicaid HCBS services. Mortality reviews were typically conducted at a local level, such as a county or region. Review findings led to local actions, such as tailored training with individual providers, to address quality of care. Officials in 13 of the 14 states reported that they aggregated mortality data, for example, by cause of death and age, whereas nationwide, 37 of 50 states aggregated mortality data and 13 states did not. For example, one California region observed an increase in choking deaths among individuals with developmental disabilities in 2007 and increased its educational outreach to families about choking prevention. Officials in several states said they believed their mortality reviews had reduced the risk of death and led to improvements in the quality of their HCBS waiver services. Four of the 14 states incorporated all additional components for more comprehensive mortality reviews. In general, these four additional components--state-level interdisciplinary mortality review committees, involvement of external stakeholders, statewide actions to address problems, and public reporting--gave the mortality reviews in these states greater accountability and transparency. Eleven of the 14 states had adopted at least one of these additional components. For example, 6 of the 14 states had interdisciplinary mortality review committees that reviewed deaths and that provided additional oversight to local review efforts, whereas nationwide, 24 of 50 states had review committees, and 26 states did not. In 6 of the 14 states, developmental disabilities agencies were not required to report deaths to the state protection and advocacy agencies, a key external stakeholder with authority to investigate deaths involving suspected abuse and neglect. Mortality reviews in 11 of the 14 states resulted in statewide actions, such as the issuance of safety alerts or new risk-prevention practices, to address quality-of-care concerns. Nationwide, 30 of 50 states took a statewide action to improve care, while 20 states did not. Four of the 14 states publicly reported mortality review information, such as posting annual mortality reports on their agency Web sites.
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Report to the Ranking Member, Committee on Finance, U.S. Senate:
United States Government Accountability Office:
GAO:
May 2008:
Medicaid Home and Community-Based Waivers:
CMS Should Encourage States to Conduct Mortality Reviews for
Individuals with Developmental Disabilities:
GAO-08-529:
GAO Highlights:
Highlights of GAO-08-529, a report to the Ranking Member, Committee on
Finance, U.S. Senate.
Why GAO Did This Study:
Deaths of individuals with developmental disabilities due to poor
quality of care have been highlighted in the media. Prior GAO work has
raised concerns about inadequate safeguards for such individuals
receiving care through state Medicaid home and community-based services
(HCBS) waivers. CMS approves and oversees these waivers. Safeguards
include the review of, and follow-up action to, critical
incidents”events that harm or have the potential to harm waiver
beneficiaries. GAO was asked to examine the extent to which states (1)
include, as a critical incident, deaths among individuals with
developmental disabilities in waiver programs; (2) have basic
components in place to review such deaths; and (3) have adopted
additional components to review deaths. GAO interviewed state
developmental disabilities agency officials and external stakeholders
in 14 states, e-mailed a survey to 35 states and D.C., interviewed
experts, and reviewed documents.
What GAO Found:
All 14 states whose officials GAO interviewed included death among
individuals with developmental disabilities as a critical incident in
their waiver programs. The developmental disabilities agencies in all
14 states required waiver service providers to report such deaths to
the agencies. Consistent with CMS‘s expectation that states review
critical incidents, nearly all states had processes in place to review
these deaths. The extent to which states other than these 14 identified
death as a critical incident has not been established.
All but 1 of the 14 states included most of the six basic mortality
review components identified as important by experts when reviewing
deaths among individuals with developmental disabilities, but states
varied somewhat in how they implemented components. For example, some
states reviewed unexpected deaths only, while other states reviewed all
deaths of individuals receiving Medicaid HCBS services. Mortality
reviews were typically conducted at a local level, such as a county or
region. Review findings led to local actions, such as tailored training
with individual providers, to address quality of care. Officials in 13
of the 14 states reported that they aggregated mortality data, for
example, by cause of death and age, whereas nationwide, 37 of 50 states
aggregated mortality data and 13 states did not. For example, one
California region observed an increase in choking deaths among
individuals with developmental disabilities in 2007 and increased its
educational outreach to families about choking prevention. Officials in
several states said they believed their mortality reviews had reduced
the risk of death and led to improvements in the quality of their HCBS
waiver services.
Four of the 14 states incorporated all additional components for more
comprehensive mortality reviews. In general, these four additional
components”state-level interdisciplinary mortality review committees,
involvement of external stakeholders, statewide actions to address
problems, and public reporting”gave the mortality reviews in these
states greater accountability and transparency. Eleven of the 14 states
had adopted at least one of these additional components. For example, 6
of the 14 states had interdisciplinary mortality review committees that
reviewed deaths and that provided additional oversight to local review
efforts, whereas nationwide, 24 of 50 states had review committees, and
26 states did not. In 6 of the 14 states, developmental disabilities
agencies were not required to report deaths to the state protection and
advocacy agencies, a key external stakeholder with authority to
investigate deaths involving suspected abuse and neglect. Mortality
reviews in 11 of the 14 states resulted in statewide actions, such as
the issuance of safety alerts or new risk-prevention practices, to
address quality-of-care concerns. Nationwide, 30 of 50 states took a
statewide action to improve care, while 20 states did not. Four of the
14 states publicly reported mortality review information, such as
posting annual mortality reports on their agency Web sites.
What GAO Recommends:
GAO is making recommendations to CMS that include (1) encouraging
states to conduct mortality reviews or broaden processes for such
reviews and (2) establishing an expectation for reporting deaths to
state protection and advocacy agencies. HHS stated that CMS concurred
with the first recommendation. However, the agency did not fully
address it. HHS did not state whether CMS agreed or disagreed with the
second recommendation.
To view the full product, including the scope and methodology, click on
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-08-529]. For more
information, contact John E. Dicken at (202) 512-7114 or
dickenj@gao.gov.
[End of section]
Contents:
Letter:
Results in Brief:
Background:
All States Whose Officials We Interviewed Include Death as a Critical
Incident:
Six Basic Mortality Review Components Identified as Important by
Experts Are Used by Most States Whose Officials We Interviewed:
A Few of the 14 States Incorporate Additional Components, Resulting in
More Comprehensive Mortality Reviews:
Conclusions:
Recommendations for Executive Action:
Agency Comments and Our Evaluation:
Appendix I: Scope and Methodology:
Appendix II: Description of More Comprehensive Mortality Review Systems
Implemented by Four States:
Appendix III: Comments from the Department of Health & Human Services:
Appendix IV: GAO Contact and Staff Acknowledgments:
Tables:
Table 1: Description of Six Basic Components of Developmental
Disabilities Agency Mortality Reviews for Individuals with
Developmental Disabilities:
Table 2: Use of the Six Basic Components for Mortality Reviews by 14
States, as of December 2007:
Table 3: Description of Four Additional Components of Developmental
Disabilities Agency Mortality Reviews for Individuals with
Developmental Disabilities:
Table 4: Use of the Four Additional Components for Mortality Reviews by
the 14 States, as of December 2007:
Figure:
Figure 1: Example of State Mortality Review Processes:
Abbreviations:
CMS: Centers for Medicare & Medicaid Services:
HCBS: home and community-based services:
HHS: Department of Health & Human Services:
ICF/MR: intermediate care facility for the mentally retarded:
[End of section]
United States Government Accountability Office:
Washington, DC 20548:
May 23, 2008:
The Honorable Charles E. Grassley:
Ranking Member:
Committee on Finance:
United States Senate:
Dear Senator Grassley:
Medicaid, the joint federal-state health care financing program for
qualifying low-income individuals, plays a major role in the financing
of community-based long-term care for individuals with developmental
disabilities, including those with mental retardation.[Footnote 1] In
1981, Congress passed section 1915(c) of the Social Security Act, which
allowed states to provide long-term care services, including personal
care, day care, transportation, and home modification, through Medicaid
home and community-based services (HCBS) waivers.[Footnote 2] While
individuals with developmental disabilities had often been cared for in
large institutions, Medicaid waivers allowed them to receive services
in residential settings such as small group homes or in the homes of
parents or relatives.[Footnote 3] The Centers for Medicare & Medicaid
Services (CMS), the federal agency that manages Medicaid, is
responsible for ensuring that states satisfactorily provide statutorily
required assurances for HCBS waivers, which include having necessary
safeguards to protect the health and welfare of waiver beneficiaries.
To support this particular assurance, CMS requests states to specify
which critical incidents--events that bring harm or have the potential
to bring harm to waiver recipients--must be reported for review and
follow-up action. CMS identifies death as an example of a critical
incident, but does not specify how states should review deaths.
Our 2003 report raised concerns about the need for CMS to provide
states with more detailed criteria regarding the necessary components
of an HCBS waiver quality assurance system, and about the limited
information provided by states to CMS on their mechanisms to monitor
the quality of care provided to waiver beneficiaries.[Footnote 4] Since
2004, several local and national newspapers have reported on deaths
that resulted from poor quality of care among individuals with
developmental disabilities living in group homes. Individuals with
developmental disabilities are vulnerable because of their cognitive
and physical impairments and dependency on caregivers for assistance
with many activities of daily living, such as eating and bathing. For
example, a 63-year-old man with visual impairment, arthritis, and
significant cognitive disabilities was living in a group home that
provided supportive care in the community and also offered recreational
activities. According to his legal guardians, they were notified in
2004 that he had suffered a fatal heart attack. In part because he did
not have a history of heart problems, his guardians requested an
autopsy. The autopsy report identified quality-of-care concerns: the
individual choked to death on what appeared to be part of a sandwich,
even though he was supposed to be fed pureed food. A subsequent
investigation of the death and conditions in the group home found that
the home was understaffed and that staff did not consistently prepare
meals to meet the special needs of residents.
In light of concerns about deaths resulting from poor quality of care
and inadequate oversight of individuals with developmental disabilities
receiving community-based care, you asked us to review states' current
processes for conducting mortality reviews and states' use of mortality
information to address quality-of-care concerns in Medicaid's HCBS
waiver program. Specifically, we examined the extent to which (1)
states include death among individuals with developmental disabilities
as a critical incident in waiver programs, (2) states have some basic
components in place to review deaths of individuals with developmental
disabilities in waiver programs, and (3) states have incorporated any
additional components to review deaths of individuals with
developmental disabilities in waiver programs.
To assess whether states include death among individuals with
developmental disabilities as a critical incident in waiver programs,
we conducted interviews with state developmental disabilities agency
officials in 14 states.[Footnote 5] To identify the basic components of
a mortality review process, we conducted a literature review,
interviewed experts in the field of developmental disabilities, and
reviewed documents authored by these experts. These experts and state
developmental disabilities agency officials who conduct mortality
reviews also contributed to the identification of additional components
of more comprehensive mortality review processes. There may be other
components for mortality reviews that were not brought to our
attention. To determine the extent to which states incorporate both
these basic and additional components into mortality reviews, we
conducted interviews with state developmental disabilities agency
officials in the 14 states and reviewed documents related to their
mortality review processes.[Footnote 6] We visited 4 of the 14 states
(Connecticut, Ohio, Oregon, and Texas) to gather detailed information
about how states review deaths of individuals with developmental
disabilities. We selected these four states because, among other
characteristics, they had well-established mortality review processes
or a large number of individuals with developmental disabilities being
served through a Medicaid HCBS waiver. We conducted focused telephone
interviews with the other 10 of 14 states that served the largest
number of individuals with developmental disabilities through Medicaid
HCBS waivers. Combined, these 14 states served approximately two-thirds
of Medicaid waiver beneficiaries with developmental disabilities
nationally in 2005. However, the mortality review processes of this
sample of 14 states cannot be generalized to all states nationwide. We
conducted a brief e-mail survey of state developmental disabilities
officials in the other 35 states and the District of Columbia
requesting information on three broad aspects of mortality review
processes.[Footnote 7] We also conducted interviews with state
protection and advocacy agencies in the 14 states and the District of
Columbia.[Footnote 8] Although we did not evaluate the effectiveness of
state mortality review processes, the data we collected allowed us to
make comparisons across states and to identify states with more
comprehensive mortality review processes. We conducted our review from
December 2006 through April 2008 in accordance with generally accepted
government auditing standards. (For a more detailed description of our
scope and methodology, see app. I.)
Results in Brief:
All 14 states whose officials we interviewed included death among
individuals with developmental disabilities as a critical incident in
their Medicaid HCBS waiver programs and required that service providers
report such deaths to developmental disabilities agencies. Consistent
with CMS's expectations for critical incidents, developmental
disability agencies in 13 of these 14 states had processes in place to
review deaths among individuals with developmental disabilities. We do
not know, however, whether states other than the 14 included such
deaths as critical incidents and reviewed those deaths.
All but 1 of the 14 states whose officials we interviewed included most
of the basic mortality review components identified as important by
experts when reviewing deaths among individuals with developmental
disabilities; however, states varied somewhat in how they implemented
these components. For example, some of the states reviewed only deaths
involving suspected abuse or neglect and other unexpected deaths, such
as those resulting from an undiagnosed condition, while other states
reviewed all deaths of individuals receiving Medicaid HCBS waiver
services. Eleven of the 14 states screened deaths using similar
information, such as the circumstances surrounding a death, to identify
cases for further review. In 11 of the 14 states, findings from
mortality reviews conducted locally led to actions at that level to
address quality of care, such as tailored training with individual
providers. To identify trends in deaths among individuals with
developmental disabilities, 13 of the 14 states reported that they
aggregated mortality data, for instance, by the causes of death and age
of beneficiary. Based on California's aggregation of mortality data,
for example, an increase in 2007 in choking deaths was observed among
individuals with developmental disabilities in one California region.
Further analysis revealed the increase was attributable to several
choking deaths among individuals living in private family homes; as a
result, the region increased its educational outreach to families about
choking prevention. Nationwide, 13 of 50 states did not aggregate
mortality data. Officials in several states in which we conducted
interviews said they believed that their mortality reviews had reduced
the risk of death and led to improvements in the quality of HCBS waiver
services. However, these states had not documented the impact of their
reviews on mortality.
Four of the 14 states whose officials we interviewed--Connecticut,
Massachusetts, Minnesota, and Ohio--incorporated all of the additional
mortality review components, resulting in more comprehensive mortality
reviews. Based on information provided by experts and state officials,
we identified four additional components that include using state-level
interdisciplinary mortality review committees, routinely involving
external stakeholders, taking statewide actions based on mortality
information to improve care, and publicly reporting mortality
information. In general, these components gave the mortality reviews in
these states greater accountability and transparency. Eleven of the 14
states had adopted at least one of the four components. For example, 6
of the 14 states had interdisciplinary mortality review committees that
examined in greater depth medically complex or unusual death cases and
provided oversight to local review efforts. Nationwide, 24 of 50 states
reported having such a committee and 26 did not. Seven of the 14 states
included in their review process stakeholders that were external to the
developmental disabilities agency. According to several state
officials, the inclusion of external stakeholders promoted
independence, which is important given the natural incentive for state
agencies to minimize errors or program weaknesses. In 6 of the 14
states, state developmental disabilities agencies were not required to
report deaths to the state protection and advocacy agencies, a key
external stakeholder with authority to investigate deaths involving
suspected abuse and neglect in this population. Protection and advocacy
agency officials in these 6 states told us that they relied on the
media or concerned family members to alert them of deaths and that such
notification was inconsistent and sometimes occurred long after the
death. Mortality reviews in 11 of the 14 states resulted in statewide
actions, such as the issuance of safety alerts or new risk-prevention
practices, to address quality-of-care concerns. Nationwide, 30 of 50
states took a statewide action based on mortality review information,
while 20 did not. Four of the 14 states publicly reported mortality
review information, which helped to ensure transparency in the
mortality review process, according to officials in one state
developmental disabilities agency.
We are making three recommendations to the Administrator of CMS to help
states address quality concerns and provide additional oversight of the
care provided to individuals with developmental disabilities.
Specifically, we recommend that CMS (1) disseminate information to
states about basic and additional components for mortality reviews; (2)
encourage states that do not include death as a critical incident or
conduct mortality reviews to do both and encourage states that include
death as a critical incident and conduct mortality reviews to broaden
their review processes; and (3) establish as an expectation for
Medicaid HCBS waivers that states report all deaths among individuals
with developmental disabilities receiving such services to their state
office of protection and advocacy. In commenting on a draft of this
report, the Department of Health & Human Services (HHS) responded that
CMS concurred with our first recommendation and will disseminate
information about mortality reviews through its stakeholders, which
include the National Association of State Medicaid Directors and the
National Association of State Directors of Developmental Disabilities
Services. HHS also responded that CMS concurred with our second
recommendation. However, the agency focused on suspicious deaths of
individuals with developmental disabilities and did not respond to the
part of our recommendation to encourage states that do not already do
so to include death as a critical incident. As noted in this report,
screening mortality information about all deaths among individuals with
developmental disabilities, not just suspicious deaths, is a basic
component of a mortality review system and is necessary to determine
whether further review of each death is warranted. HHS did not respond
as to whether CMS agreed or disagreed with our third recommendation but
recognized independent third-party reviews as important.
Background:
In 2004, Medicaid HCBS waiver expenditures totaled $20.5 billion, with
about 74 percent ($15.2 billion) devoted to supporting community-based
care for individuals with developmental disabilities. About 40 percent
(415,053) of individuals served through such waivers had developmental
disabilities.[Footnote 9] Expenditures per person on this population
are higher than for other groups served through the waivers, such as
the elderly, because developmentally disabled individuals often require
supportive care on a 24-hour basis. In 2004, annual Medicaid HCBS
waiver expenditures per person served were $36,697 on average for
individuals with developmental disabilities compared with $6,266 on
average for elderly individuals.[Footnote 10] Fifty states had 1915(c)
waiver programs for individuals with developmental disabilities in
2006.[Footnote 11] Waiver services vary by state but include services
intended to help individuals live as independently as possible in the
community.
Eligibility:
To be eligible for Medicaid HCBS waiver services, including services
for individuals with developmental disabilities, individuals must meet
the state's criteria for needing the level of care provided in an
institution, such as an ICF/MR, and be able to receive care in the
community at a cost generally not exceeding the cost of institutional
care.[Footnote 12] As described in CMS's guidance for HCBS waivers, a
developmental disability is defined as a severe, chronic disability,
attributable to mental or physical impairments, with onset before age
22. Individuals with developmental disabilities are limited in their
ability to carry out several major life activities, including self-care
and mobility.
Waiver Quality:
To receive federal funds for Medicaid HCBS waiver services, states must
satisfactorily provide the statutory assurances for the 1915(c) waiver
program that include having necessary safeguards to protect the health
and welfare of beneficiaries.[Footnote 13] CMS requires that states
submit waiver applications that identify and describe how they will
provide each of the statutory assurances. On the waiver application,
CMS expects as part of the health and welfare assurance that states
specify (1) which critical incidents states require to be reported to
developmental disabilities agencies and appropriate authorities for
review and (2) the follow-up actions required if the state identifies a
situation in which a beneficiary was not being safeguarded.[Footnote
14] CMS guidance for waiver applications instructs that incidents of
abuse, neglect, and exploitation, at a minimum, be reported and
reviewed; states may define other events as critical, as well.[Footnote
15] For example, CMS identifies death as an event that states may
include as a critical incident.[Footnote 16]
When reviewing HCBS waiver applications, CMS determines whether states
meet program expectations, such as including the entity responsible for
managing critical incidents to demonstrate necessary safeguards are in
place. Initial waiver applications, if approved, are approved for a 3-
year period, and subsequent applications are approved for an additional
5-year period, unless CMS determines that the assurances provided
during the preceding term have not been met.[Footnote 17] In a 2003
report, we examined the adequacy of CMS's oversight of state Medicaid
waiver programs and recommended that the Administrator of CMS develop
and provide states with more detailed criteria regarding the necessary
components of an HCBS waiver quality assurance system.[Footnote 18]
In response to our recommendation, CMS added an expectation to its
Medicaid HCBS waiver program for states to improve the quality of
waiver services and has implemented this new expectation in the form of
an additional section on the HCBS waiver application. CMS defines
quality improvement as the process of collecting information about
Medicaid HCBS waiver programs to identify and correct concerns and to
identify areas for improving the care provided to waiver beneficiaries.
States can use information gathered from their critical incident
reviews to determine whether strategies are needed to improve the
quality of care. States applying for new waivers or waiver renewals
after May 2005 were asked to submit a detailed description of their
quality improvement strategies.[Footnote 19] For example, CMS guidance
directs states to describe processes used to measure the performance of
their waiver programs and to develop initiatives for quality
improvement. CMS is encouraging and helping states to develop quality
improvement strategies. As of October 2007, CMS had provided technical
assistance to more than 40 states and more than 140 waiver programs
that requested assistance in developing and implementing their quality
improvement strategies for the Medicaid HCBS waiver programs. In
addition, a provision of the Deficit Reduction Act of 2005 requires the
Agency for Healthcare Research and Quality to develop HCBS quality-of-
care measures, which CMS may incorporate into its waiver program if the
measures reinforce the agency's expectations for states regarding
quality improvement.[Footnote 20]
State Operation of Waiver Programs:
When a state receives a Medicaid HCBS waiver, the state's Medicaid
agency is accountable to CMS for compliance with waiver program
expectations. State Medicaid agencies may delegate administrative and
operational responsibility for waiver programs to the department or
agency with jurisdiction over the specific population served or
services provided. For waivers serving individuals with developmental
disabilities, operational responsibility is often delegated to the
state developmental disabilities agency. State developmental
disabilities agencies may then contract with local providers, networks,
or agencies to provide or arrange for beneficiary services. Some states
use state employees to provide waiver services to individuals with
developmental disabilities, such as case management services that
include individual assessments and monitoring of care.
Protection and Advocacy Agencies:
State protection and advocacy agencies may be involved with state
developmental disabilities agencies in the review of critical incidents
among individuals with developmental disabilities where there is
suspicion of abuse or neglect. The Developmental Disabilities
Assistance and Bill of Rights Act of 1975 established the protection
and advocacy system to protect the legal and human rights of people
with developmental disabilities.[Footnote 21] In order to receive
federal protection and advocacy funding, states must have a protection
and advocacy agency, independent of any service provider.[Footnote 22]
Given that abuse and neglect among individuals with developmental
disabilities might not always be evident, protection and advocacy
agencies play an important role in monitoring services provided to such
individuals. The Developmental Disabilities Assistance and Bill of
Rights Act, as amended, authorizes funding for protection and advocacy
agencies to (1) investigate allegations of abuse or neglect when
reported; (2) investigate suspected abuse or neglect when there is
probable cause that incidents occurred; (3) pursue legal,
administrative, and other appropriate remedies on behalf of individuals
with developmental disabilities; and (4) provide information on
developmental disability programs to the public, among other things. As
a condition of funding, the act requires protection and advocacy
agencies to have access to individuals with developmental disabilities
and to their records, including reports prepared by agencies or staff
on injuries or deaths. The act also requires, as a condition of
funding, that states provide information--to the extent it is
available--on the adequacy of HCBS waiver services to their protection
and advocacy agencies.
All States Whose Officials We Interviewed Include Death as a Critical
Incident:
All 14 states whose officials we interviewed included death among
individuals with developmental disabilities as a critical incident in
their waiver programs. Officials in these states told us that the
developmental disabilities agency required waiver services providers to
report to the agency deaths of individuals with developmental
disabilities. Consistent with CMS's expectation that states review
critical incidents, the developmental disabilities agencies in 13 of
the 14 states we interviewed had processes in place to review deaths.
We do not know if states other than these 14 define, report, and review
deaths as critical incidents. Because most states have laws that
require reporting to coroners or medical examiners when the cause of a
death is unknown or unnatural, it is likely that at least some deaths
of individuals with developmental disabilities in the remaining 36
states are investigated.[Footnote 23] However, we did not review the
extent to which information about such investigations is shared with
the developmental disabilities agencies.
Six Basic Mortality Review Components Identified as Important by
Experts Are Used by Most States Whose Officials We Interviewed:
All but 1 of the 14 states whose officials we interviewed included most
of the six basic mortality review components experts identified as
important when reviewing deaths among individuals with developmental
disabilities; however, states varied somewhat in how they implemented
these components. For example, some states' officials said they
reviewed unexpected deaths only, whereas others reviewed deaths of all
developmentally disabled individuals receiving state-funded services.
Screening and reviews in most states were typically conducted at a
local level, such as a county or region, and review findings led to
local actions, such as tailored training with individual providers, to
address quality of care. Officials in most of the 14 states in which we
conducted interviews reported that they aggregated mortality
information. Officials in several of the 14 states in which we
conducted interviews told us they believed mortality reviews reduced
the risk of death and improved the quality of services provided;
however, these states had not documented the impact of reviews on
mortality.
Six Basic Components Identified as Important for Mortality Reviews:
We identified and defined six basic components for state mortality
reviews, based on interviews with five developmental disabilities
experts and documents they authored (see table 1). The five experts
believed that these components were important when reviewing deaths
among individuals with developmental disabilities. Our literature
review added support to the identification of these components for
mortality reviews. First, standard information is collected about the
individual's death, and this information is screened by developmental
disabilities agency staff to determine if further review of the death
is needed (component 1). If it is determined that a mortality review is
warranted--for example, if the death was unexpected or the screening
suggests a possible quality-of-care concern--officials may conduct a
more in-depth review to evaluate the cause and circumstances of the
death and the individual's medical condition (component 2). Mortality
reviews include medical professionals (component 3). The mortality
review process is documented (component 4) and may result in
recommendations that address any quality-of-care concerns identified
(component 5). Mortality data for deaths among individuals with
developmental disabilities are aggregated to identify trends over time
(component 6). For example, aggregated data can indicate patterns by
cause of death, age, services received, or other programmatic factors.
Table 1: Description of Six Basic Components of Developmental
Disabilities Agency Mortality Reviews for Individuals with
Developmental Disabilities:
Component: 1. Screen individual deaths with standard information;
Description:
* A preliminary screen of standard mortality information is conducted
to determine whether a death requires further review or investigation;
* The same information is routinely collected for each death.
Component: 2. Review unexpected deaths, at a minimum;
Description:
* Cause and circumstances of deaths are reviewed to identify issues or
concerns that may have compromised the overall care provided;
* Unexpected deaths may include those that resulted from an undiagnosed
condition, were accidental, or were suspicious for possible abuse or
neglect.
Component: 3. Routinely include medical professionals in mortality
reviews;
Description:
* Medical professionals, including registered nurses or physicians,
should participate in mortality reviews because individuals with
developmental disabilities often have complex medical characteristics.
Component: 4. Document mortality review process, findings, or
recommendations;
Description:
* Records of the mortality review process are maintained and may
include meeting minutes or summary reports.
Component: 5. Use mortality information to address quality of care;
Description:
* Information resulting from the mortality review process should be
used to improve the quality of care provided;
* If mortality review findings apply to statewide practices, state
agencies make the necessary changes to their policies.
Component: 6. Aggregate mortality data over time to identify trends;
Description:
* Data about deaths among individuals with developmental disabilities,
such as cause of death and demographic information, are aggregated over
time to identify patterns and trends.
Source: GAO analysis.
Note: To develop this table, GAO analyzed information provided by
experts in the field of developmental disabilities and performed a
literature review.
[End of table]
Figure 1 illustrates how a state incorporated the six components in an
actual mortality review involving a 44-year-old woman with
developmental disabilities. The woman died of pancreatitis while living
in a community group home and receiving Medicaid HCBS waiver services.
[Footnote 24]
Figure 1: Example of State Mortality Review Processes:
[See PDF for image]
This figure provides the following information:
Example of State Mortality Review Processes:
* Upon screening mortality information (component 1), local
developmental disabilities officials determined that a 44-year-old
woman‘s death from pancreatitis was unexpected and that she also had
fallen and sustained a head injury, which resulted in a hospitalization
prior to her death. Therefore, the case was identified as one
warranting a more in-depth mortality review (component 2).
* Medical professionals within the developmental disabilities agency
reviewed the case (component 3) and found no indications that the woman
was experiencing any health problems in the month preceding her death.
The woman had been taking a medication for behavior management
(Valproic acid). One possible adverse reaction associated with Valproic
acid use is pancreatitis. Reviewers determined the fall and subsequent
head injury to be an accident, but the deceased‘s blood levels
indicated that she had an undiagnosed case of pancreatitis in its
advanced stages.
* The review of the case and recommendations made based on review
findings were documented by the developmental disabilities agency
(component 4).
* As a result of this case, the agency nurses now track individuals who
take Valproic acid and discuss at quarterly meetings how these
individuals are being monitored (component 5).
* The developmental disabilities agency included this case in its
aggregation of 2006 mortality data by cause. For example, this death
was counted as an unexpected death because it was not related to a
known medical condition (component 6).
Source: GAO review of documents provided by one state developmental
disabilities agency.
[End of figure]
Thirteen of 14 States Incorporate Most of the Basic Mortality Review
Components, but Some Variation Exists:
All but 1 of the 14 states whose officials we interviewed included most
of the basic mortality review components identified by experts as
important when reviewing deaths, but some variation existed (see table
2). The one state that did not include most of these components was
Texas. While developmental disabilities agency officials in Texas told
us that state-level officials screened some standard information about
deaths, they said the agency did not have a systematic process for
reviewing deaths to identify and address quality-of-care issues.
Instead, information was referred to investigative authorities, such as
adult protective services, if the screening process revealed the death
was suspicious. Texas state officials also told us that they did not
currently aggregate mortality data.
Table 2: Use of the Six Basic Components for Mortality Reviews by 14
States, as of December 2007:
Component: Screen individual deaths with standard information;
California: Implemented this component all the time;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Implemented this component all the time;
Iowa: Implemented this component all the time;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time;
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Implemented this component all the time;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Component: Review unexpected deaths, at a minimum;
California: Implemented this component all the time;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Did not implement this component[A];
Iowa: Implemented this component all the time;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time;
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Component: Routinely include medical professionals in mortality
reviews;
California: Implemented this component all the time;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Implemented this component all the time;
Iowa: Did not implement this component[B];
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time;
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Did not implement this component[B].
Component: Document mortality review process, findings, or
recommendations; Implemented this component all the time;
California: Implemented this component all the time;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Implemented this component all the time;
Iowa: Implemented this component all the time;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time;
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Component: Use mortality review information to address quality of care;
California: Implemented this component all the time;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Implemented this component all the time;
Iowa: Implemented this component all the time;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time;
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Component: Aggregate mortality data over time to identify trends;
California: Implemented this component all the time;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Implemented this component all the time;
Iowa: Implemented this component all the time;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time;
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Source: GAO interviews with state developmental disabilities agency
officials.
Note: These 14 states served approximately two-thirds of Medicaid
waiver beneficiaries with developmental disabilities nationally in
2005.
[A] Developmental disabilities agency staff might review certain deaths
among individuals with developmental disabilities that were unexpected.
[B] Medical professionals were only included on an as-needed basis.
[End of table]
However, there was variation among the states in how they implemented
the six components. Officials in some states in which we conducted
interviews told us they reviewed only deaths determined to be
unexpected or suspicious, but in other states all deaths among
individuals receiving agency services were reviewed. Some states also
used criteria other than the cause of death to determine whether a case
warranted further review. In Washington, for example, all suspicious
deaths in community settings were reviewed regardless of cause of
death, but unanticipated deaths were reviewed on a case-by-case basis,
depending on the outcome of a local-level screening process. In
Massachusetts, officials routinely reviewed the deaths of all
individuals, including those residing in a private home, if they had
been receiving more than 15 hours of agency-funded community support
services. Agency officials in other states we interviewed also told us
that they did not generally have enough information to conduct a
thorough mortality review for individuals receiving limited waiver
services. Moreover, the extent to which states used mortality review
information to address quality of care varied. For example, while
officials in 13 of 14 states told us they used information from
individual cases to take actions on the basis of mortality review
findings (e.g., to enhance provider training), officials in 3 of 14
states reported conducting further research on issues identified during
mortality reviews.
Screening Similar Mortality Information and Reviewing Unexpected Deaths
Occurs Locally in Most States Whose Officials We Interviewed:
In 11 of the 14 states whose officials we interviewed, the screening of
similar mortality information, such as the circumstances surrounding a
death, was conducted by county-level or regional developmental
disabilities agency officials, and the results were used to identify
cases for further review. Similarly, in most of these states local
developmental disabilities officials undertook a more in-depth
mortality review of those cases identified during the screening process
as unexpected or suspicious for abuse or neglect, or those in which a
possible quality-of-care concern was identified.
Similar Mortality Information Usually Screened Locally:
According to developmental disabilities officials in 11 of the 14
states in which we conducted interviews, similar mortality information,
such as the cause of death, was routinely screened at a local level.
Local officials collected and used this information to identify
suspicious or unexpected deaths, often as part of states' critical
incident management systems. Specifically, local officials screened
mortality information such as the cause of death, the circumstances
surrounding a death (e.g., whether the death was an accident or
witnessed by a direct care provider), and the individual's diagnoses or
clinical conditions prior to death. Screening this information allows
local agency officials to identify cases of possible abuse or neglect
of Medicaid HCBS waiver beneficiaries and respond to such cases by
providing for the safety of other individuals with developmental
disabilities cared for in the same setting, as well as referring the
cases to the appropriate authorities for criminal investigations. In
Florida, for example, local nurses, who were developmental disabilities
agency officials, screened information about the circumstances
surrounding deaths to determine if they warranted further review. When
the local nurses suspected abuse or neglect, adult protective services
and law enforcement officials were notified to conduct an
investigation. State developmental disabilities officials in a few of
the 14 states told us that they also used the screening process to
determine if further review should be conducted for expected deaths or
for cases not considered suspicious but where possible quality-of-care
concerns existed.
Mortality Reviews Mostly Conducted Locally:
Based on the results of the screening process, reviews of deaths among
individuals with developmental disabilities also occurred at the local
level in 11 of 14 states. These 11 states conducted reviews locally
because the developmental disabilities agency oversight for waiver
services was delegated to counties or regions.[Footnote 25] In addition
to reviewing in greater depth the cause and circumstances surrounding
the death and the individual's clinical diagnoses and health
conditions, officials in most of the 14 states told us that they also
reviewed hospital records and health care professionals' progress
notes, as well as autopsy findings when available. Lab reports and
individual support or behavioral plans might also be reviewed to better
understand each case. Reviewing multiple pieces of information
surrounding the death is useful because they can show whether
appropriate medical care was provided in the days and months before
death and whether individual support plans were followed. For example,
the mortality review process could reveal that an individual choked to
death on solid food but that the individual's support plan indicated he
or she was supposed to receive a pureed diet. Similarly, a review of
the medical records of an individual who died from influenza or
pneumonia could show whether he or she had received vaccines for these
conditions.
Mortality reviews also were used to determine whether quality-of-care
issues unrelated to the death existed. For example, officials in Ohio
told us that in reviewing one death, the documentation in the
individual support plan outlining the care that was supposed to be
delivered did not match the care that had actually been provided. While
the mortality review determined that the care the person received did
not contribute to the death, concerns were raised that direct care
staff was not following the individual's support plan.
Many Actions to Address Quality of Care Taken Locally, While Mortality
Information Is Aggregated Statewide in 13 of 14 States:
While developmental disabilities agency officials in the 14 states
aggregated mortality information statewide, they told us that local-
level officials use mortality review information to take local actions
to address quality-of-care concerns. Based on mortality review
findings, nearly all 14 states had provided tailored training or
technical assistance to direct care providers in a particular county or
region. For example, when officials in Washington identified an
increase in drowning among individuals with seizure disorders in a
particular region, the developmental disabilities agency retrained its
providers in that region to try to prevent future occurrences. In
addition, based on their mortality reviews, officials in Pennsylvania
told us they provided targeted training on choking to a local provider
because of a trend in choking deaths among individuals with
developmental disabilities served by that provider. Officials we
interviewed in other states also cited targeted training or assistance
to local providers.
As shown in table 2, 13 of the 14 states aggregated mortality data.
These states aggregated data by variables including age, cause of
death, the type of program or services provided to individuals with
developmental disabilities, or other programmatic factors to identify
trends over time. Officials in these states told us that aggregating
mortality data was useful because it allowed them to identify trends,
such as determining if particular types of deaths are isolated or part
of a pattern. For example, in March 2007, officials from California's
developmental disabilities agency observed an increased mortality rate
among individuals with developmental disabilities in one region, and
further analysis revealed the increase was attributable to several
choking deaths among individuals living in private family homes. This
region increased its educational outreach to families on the topic of
choking prevention. In addition to aggregating mortality data,
Connecticut, Massachusetts, and California calculated mortality rates
among individuals with developmental disabilities. Connecticut and
Massachusetts officials used aggregated mortality data to make broad
comparisons with each other as well as with mortality rates for the
general population in their states and across the nation. Officials in
Massachusetts also calculated cause-specific mortality rates for
individuals with developmental disabilities; they recently found that
breast-cancer mortality rates were higher over a 5-year period for
Massachusetts's women with developmental disabilities than for the
general state population and nationwide.
All but 1 of the 14 states in which we conducted interviews reported
aggregating mortality data, and 24 of the 36 states that completed our
e-mail survey reported doing so. Combined, 13 of 50 states did not
aggregate mortality data, and 37 did. Among these 37 states, more than
80 percent aggregated mortality data on variables that included the
cause of death, age, and other factors, such as the county or region
where the death occurred, diagnosis at time of death, and whether an
autopsy was performed or a medical examiner was involved in the case.
In addition, nearly two-thirds of the 37 states nationwide that
aggregated mortality data also aggregated on the variable of program
type or type of services provided to the individual with developmental
disabilities prior to his or her death. Thirteen states nationwide
reported they did not aggregate mortality data for these individuals at
the time we did our work.
Officials in Several States in Which We Conducted Interviews Believed
Mortality Reviews Reduce Risk of Death and Improve Quality of Care:
Officials in several states in which we conducted interviews said they
believed that their mortality review processes had reduced the risk of
death and served as one means for improving the quality of services
provided in their HCBS waiver programs. However, these states had not
documented the impact of reviews on mortality. Officials in some states
also said that the reviews had contributed to a decrease in critical
incidents, which might have resulted in reduced mortality. For example,
a Connecticut state official told us that the implementation of
mortality review recommendations, such as improving the competency of
direct care staff in managing swallowing risks, had likely reduced the
number of critical incidents among individuals with developmental
disabilities. In addition, developmental disabilities agency officials
in Oregon told us that they believed mortality review findings and
subsequent actions, such as enhancing providers' procedures for
handling critical incidents that can result in death, had led to
quality-of-care improvements for this population. Officials in 11 of
the 14 states we interviewed told us that they considered their
mortality review processes for deaths among individuals with
developmental disabilities to be one aspect of their waiver's overall
quality improvement strategy.
A Few of the 14 States Incorporate Additional Components, Resulting in
More Comprehensive Mortality Reviews:
Four of the 14 states whose officials we interviewed--Connecticut,
Massachusetts, Minnesota, and Ohio--incorporated all of the additional
mortality review components, resulting in more comprehensive mortality
reviews. We identified and defined four additional components based on
information provided by experts and state officials. In general, these
additional components--using state-level interdisciplinary mortality
review committees, involvement of external stakeholders, taking
statewide actions based on mortality information to improve care, and
public reporting--gave the mortality reviews in these states greater
accountability and transparency. Eleven of the 14 states had adopted at
least one of the additional components. For example, 6 of the 14 states
had interdisciplinary mortality review committees that provided
additional oversight and added value to local mortality review efforts.
Seven of the 14 states routinely included stakeholders external to the
developmental disabilities agency in their mortality reviews, and
several state officials told us that stakeholder involvement promoted
independence or shared accountability.
Additional Mortality Review Components Provide Greater Accountability
and Transparency:
Four of the 14 states whose officials we interviewed incorporated all
four additional mortality review components that we identified and
defined for more comprehensive review processes. The additional
components were identified based on interviews with five developmental
disabilities experts and state officials.[Footnote 26] Another 7 of the
14 states incorporated one or two additional components (Florida,
Illinois, New York, Oregon, Pennsylvania, Washington, and Wisconsin).
Eleven of the 14 states had adopted at least one of the additional
components. The inclusion of these four components--using a state-level
interdisciplinary mortality review committee, including external
stakeholders in the review process, taking statewide actions based on
mortality information to improve care, and publicly reporting mortality
information--generally gave the mortality review processes in these
states greater accountability and transparency (see table 3). State-
level committees include professionals with various experiences in the
field of developmental disabilities who review selected deaths to
assess factors that may have contributed to death, such as medical or
supportive care. Having a representative of the state's protection and
advocacy agency sit on the state-level mortality review committee is
one example of how a developmental disabilities agency may routinely
involve stakeholders not directly associated with the agency in its
review process. When significant quality-of-care concerns are
identified by mortality reviews, the state developmental disabilities
agency uses such information to take statewide actions, such as
requiring specific training for providers' direct care staff statewide
in order to improve care for all waiver beneficiaries. The
developmental disabilities agency publicly reports mortality
information, such as posting on its Web site aggregated data about the
number and causes of deaths among individuals who received care by the
agency.
Table 3: Description of Four Additional Components of Developmental
Disabilities Agency Mortality Reviews for Individuals with
Developmental Disabilities:
Component: Use a state-level interdisciplinary mortality review
committee (e.g., overseen by developmental disabilities agency);
Description:
* Committees consist of professionals with experience in the field of
developmental disabilities from various disciplines. They routinely
review and discuss individual deaths to identify quality-of-care
concerns;
* Committees can provide a comprehensive review of deaths of
individuals with developmental disabilities, who often have complex
medical and social needs.
Component: Routinely include external stakeholders in review process
(e.g., protection and advocacy agency);
Description:
* Individual stakeholders, who are not directly associated with the
developmental disabilities agency that provides or arranges for the
provision of care, are included in the agency's mortality review
process;
* Given their role in protecting individuals with developmental
disabilities from abuse and neglect, state protection and advocacy
agencies are important stakeholders.
Component: Take statewide action based on mortality information to
systematically improve care;
Description:
* When areas of improvement are identified by mortality reviews, state
developmental disabilities agencies' actions affect all state providers
rather than singling out just one provider.
Component: Publicly report mortality information;
Description:
* State developmental disabilities agencies publicly report mortality
data or mortality review findings, which may include posting such
information on the agency's Web site.
Source: GAO analysis.
Note: To develop this table, GAO analyzed information provided by
experts in the field of developmental disabilities and state
developmental disabilities agency officials, and performed a literature
review.
[End of table]
States that incorporated additional mortality review components varied
in how they implemented them. For example, in Ohio the developmental
disabilities agency oversaw its state-level interdisciplinary
committee, while in Minnesota the Office of the Ombudsman for Mental
Health and Developmental Disabilities provided oversight of its state-
level committee, but the committee in Minnesota included a member from
the state developmental disabilities agency. In Minnesota, the Office
of the Ombudsman, not the state developmental disabilities agency, was
also responsible for publicly reporting mortality information on the
state's Web site. Appendix II provides detailed information about the
more comprehensive mortality review systems in Connecticut,
Massachusetts, Minnesota, and Ohio.
State-Level Interdisciplinary Mortality Review Committees Conduct
Reviews and Provide Local Review Oversight in 6 of the 14 States:
In 6 of the 14 states, developmental disabilities agency officials told
us that they used state-level interdisciplinary mortality review
committees to oversee local review efforts and to add overall value to
the review process (see table 4). One aspect of oversight is ensuring
consistency in the local-level mortality reviews conducted by
developmental disabilities officials across a state. For example, for
the purposes of quality assurance, state-level mortality review
committees in both Connecticut and Massachusetts reviewed at least 10
percent of cases that local officials had determined did not warrant
further review. Massachusetts officials told us that the state's
committee reviewed these cases to ensure that its review procedures
were followed, these cases were being appropriately closed locally, and
there was consistency across the different local levels conducting
reviews.
Table 4: Use of the Four Additional Components for Mortality Reviews by
the 14 States, as of December 2007:
Component: Use state-level interdisciplinary mortality review committee
(e.g., overseen by developmental disabilities agency);
States whose officials GAO interviewed:
California: Did not implement this component;
Connecticut: Implemented this component all the time;
Florida: Did not implement this component;
Illinois: Did not implement this component;
Iowa: Did not implement this component;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time[A];
New York: Did not implement this component;
Ohio: Implemented this component all the time;
Oregon: Did not implement this component;
Pennsylvania: Did not implement this component;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Component: Routinely include external stakeholders in review process
(e.g., protection and advocacy agency);
States whose officials GAO interviewed:
California: Did not implement this component;
Connecticut: Implemented this component all the time;
Florida: Did not implement this component;
Illinois: Did not implement this component;
Iowa: Did not implement this component;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time[A];
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Did not implement this component;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Did not implement this component;
Wisconsin: Did not implement this component.
Component: Take statewide action based on mortality information to
systematically improve care;
States whose officials GAO interviewed:
California: Did not implement this component;
Connecticut: Implemented this component all the time;
Florida: Implemented this component all the time;
Illinois: Implemented this component all the time;
Iowa: Did not implement this component;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time[A];
New York: Implemented this component all the time;
Ohio: Implemented this component all the time;
Oregon: Implemented this component all the time;
Pennsylvania: Implemented this component all the time;
Texas: Did not implement this component;
Washington: Implemented this component all the time;
Wisconsin: Implemented this component all the time.
Component: Publicly report mortality information;
States whose officials GAO interviewed:
California: Did not implement this component;
Connecticut: Implemented this component all the time;
Florida: Did not implement this component;
Illinois: Did not implement this component;
Iowa: Did not implement this component;
Massachusetts: Implemented this component all the time;
Minnesota: Implemented this component all the time[B];
New York: Did not implement this component;
Ohio: Implemented this component all the time;
Oregon: Did not implement this component;
Pennsylvania: Did not implement this component;
Texas: Did not implement this component;
Washington: Did not implement this component;
Wisconsin: Did not implement this component;
Source: GAO interviews with state developmental disabilities agency
officials.
Note: These 14 states served approximately two-thirds of Medicaid
waiver beneficiaries with developmental disabilities nationally in
2005.
[A] The state-level interdisciplinary committee was overseen by the
Office of the Ombudsman for Mental Health and Developmental
Disabilities, and its membership included a representative from the
state developmental disabilities agency.
[B] The Office of the Ombudsman for Mental Health and Developmental
Disabilities, rather than the state developmental disabilities agency,
publicly reported mortality information.
[End of table]
In addition, state-level committees examined in greater depth cases
that were medically complex or unusual. For example, in Ohio, the state-
level committee recently reviewed a case where an individual died
suddenly. The individual had multiple medical conditions, including a
history of heart disease, and upon review, the committee found that
this individual was taking a medication contraindicated for persons who
have or had heart problems. The committee issued a safety alert--a
notice to community providers to increase their awareness of a
particular risk or safety concern--about the use of this medication by
individuals with developmental disabilities who have heart conditions.
[Footnote 27] In another example, the Minnesota state-level review
committee reviewed an unusual case where an individual was hospitalized
for a minor surgical procedure and discharged. Three days later the
individual was readmitted to the hospital with a diagnosis of
aspiration pneumonia and an overdose of sedatives and prescription pain
medications; after being placed on life support the individual's
condition worsened and life support was withdrawn, resulting in death.
After review of the death by the state-level review committee, the
developmental disabilities agency issued a safety alert, including a
recommendation by the committee for improving the care provided to
individuals receiving pain medication.
State-level committee reviews were more likely than those at the local
level to be conducted by physicians, specifically, physicians with
experience treating individuals with developmental
disabilities.[Footnote 28] Of the 6 states that used state-level
interdisciplinary mortality review committees, officials in 4 states
told us that physicians sat on their committees and routinely reviewed
deaths. By contrast, only 1 of the 14 states reported that physicians
routinely participated in the local review process. Physician
participation is important given the complex medical conditions of
individuals with developmental disabilities. For example, Ohio
officials told us that it is important for physicians with experience
treating individuals with developmental disabilities to review
medically complex cases because such physicians are able to assess the
adequacy or appropriateness of the medical care provided prior to
death. Officials also said that such physicians are highly qualified to
evaluate actions taken by other physicians or hospital staff--
especially medical personnel without experience caring for individuals
with developmental disabilities. For example, one physician serving as
Medical Director for a state developmental disabilities agency noted
that a death may be inappropriately attributed to natural causes by
nonmedical reviewers but a physician's in-depth review of medical
records and medication logs could uncover poor care that contributed to
the death.
In addition to physicians, state-level interdisciplinary mortality
review committees incorporated the knowledge and perspectives of a
variety of professionals with differing experiences and responsibility.
[Footnote 29] While physicians and nurses contributed medical and other
clinical expertise to the mortality review committees, licensing,
public health, investigative, and quality assurance professionals
brought other important kinds of expertise. One state official told us
that the participation of various types of professionals improved the
quality of mortality review findings. Some state officials we
interviewed described the value that different professionals brought to
mortality reviews. For example, they said that state licensing
professionals are best able to assess whether a provider followed state
regulations and standards of practice for care. Similarly, an
investigator is best suited to evaluate the circumstances of death for
possible abuse or neglect. Finally, quality assurance professionals
have expertise in monitoring and improving delivery systems and, as a
result, can evaluate whether statewide actions may be needed to address
identified quality-of-care concerns.
According to the 36 states that completed our e-mail survey, the
prevalence of state-level interdisciplinary mortality review committees
was similar to that in the 14 states whose officials we interviewed--
about half had such a committee (18 of 36 states). Combined, 24 of 50
states reported having a state-level review committee, and 26 did not.
The types of members on state-level committees in the 36 states we
surveyed were similar to those in the 14 states in which we conducted
interviews. Among the 24 of 50 states that we interviewed or surveyed
that reported having committees, about 80 percent included physicians
or nurses, and 67 percent included quality assurance professionals.
Nearly half of all states with committees also reported that they
included investigative or forensic professionals as well as
representatives from the provider community.
Half of the 14 States Routinely Include External Stakeholders in
Mortality Reviews, Promoting Independence or Shared Accountability:
Seven of the 14 states routinely included stakeholders external to the
developmental disabilities agency in their mortality review process.
State officials told us they included external stakeholders as a way to
promote independence or shared accountability. Four of 7 states used
state protection and advocacy agencies regularly for this purpose.
[Footnote 30] For example, in Connecticut an official of the protection
and advocacy agency was a member of the developmental disabilities
agency's state-level interdisciplinary mortality review committee. In
several of these 7 states, other organizations or state offices with a
role in protecting and advocating for the rights of individuals with
developmental disabilities also participated in the state developmental
disabilities agency mortality reviews, or they conducted their own
reviews. In Massachusetts, for example, a representative of the
Disabled Persons Protection Commission was a member of the agency's
state-level interdisciplinary mortality review committee, while in
Minnesota the Office of the Ombudsman for Mental Health and
Developmental Disabilities--a state office separate from the
developmental disabilities agency--independently reviewed each death
among individuals with developmental disabilities.
Several developmental disabilities experts and state agency officials
told us that external stakeholder involvement in states' mortality
review processes can promote independence and shared accountability.
According to experts, a natural incentive exists for state agency
officials to minimize errors or program weaknesses identified through
the mortality review process, making independence important. A federal
district court found that the District of Columbia's developmental
disabilities agency deleted factual information about eight deaths
among individuals with developmental disabilities from death
investigation reports in order to minimize quality-of-care concerns.
[Footnote 31] Specifically, information was deleted about delays in
obtaining consent for medical procedures and gaps in case management.
During our interviews with developmental disabilities agency officials
in 14 states, we observed that external stakeholder involvement could
also result in shared accountability for improving the quality of care.
Because stakeholders may influence how the agency addresses identified
quality-of-care concerns, stakeholders may be more likely to support
the agency's efforts to improve the quality of care for individuals
with developmental disabilities.
The protection and advocacy agencies are of particular value as
external stakeholders because of their authority to investigate certain
deaths. Moreover, states that receive protection and advocacy funding
are required to provide information on the quality of HCBS services to
their protection and advocacy agencies, to the extent information is
available. We found that state developmental disabilities agencies in 8
of the 14 states were required to report deaths among individuals with
developmental disabilities to their state's protection and advocacy
agency. The protection and advocacy agencies received notification in
several ways, such as on a case-by-case basis or through the
distribution of weekly reports of deaths. Developmental disabilities
agency officials in 2 states told us that they granted access to their
electronic critical incident management system databases to the
protection and advocacy agencies in their states. For example, while
the protection and advocacy agencies were not notified of all deaths in
Pennsylvania and Ohio, protection and advocacy officials told us they
could access death reports among individuals with developmental
disabilities by monitoring the critical incident database. In 6 of the
14 states in which protection and advocacy officials were not notified
of deaths among individuals with developmental disabilities, protection
and advocacy agency officials told us that state developmental
disabilities agencies should be required to notify their protection and
advocacy agencies of these deaths. Protection and advocacy agencies
that did not receive notification of deaths relied on the media or
concerned family members to alert them of deaths, but such notification
was inconsistent and sometimes happened long after the death occurred.
Because abuse and neglect can be difficult to detect among individuals
with developmental disabilities, developmental disabilities agency
officials may attribute some deaths to known or natural causes, even
though abuse or neglect contributed to death. As a result, such cases
may not have been referred to investigative authorities, such as
medical examiners or the state protection and advocacy agency. One
state's protection and advocacy officials told us that their own
investigation of a death after notification by a family member
identified care concerns that state developmental disabilities agency
and law enforcement officials had not detected. Protection and advocacy
officials in two other states found neglect when they conducted reviews
of two deaths that the states had determined were due to natural
causes.
Mortality Reviews Result in Statewide Actions to Address Similar Care
Concerns and to Help Prevent Deaths in Most of the 14 States:
In 11 of the 14 states, mortality reviews resulted in statewide actions
to address similar quality-of-care concerns and to help prevent
avoidable deaths among individuals with developmental disabilities. The
statewide actions resulting from mortality reviews included the
issuance of safety alerts, additional or enhanced training of staff,
and new risk-prevention practices. The most common statewide action--
taken by 9 of the 14 states--was the issuance of safety alerts. For
example, after several individuals with developmental disabilities in
Minnesota died, in part because of delayed emergency medical care, the
agency sent a statewide safety alert to service providers with
recommendations to prevent similar incidents, including that community
providers authorize their direct care staff to call 911 when they
suspect a medical emergency without first obtaining approval from a
manager. In Ohio, officials alerted agency staff to an increase, from
2005 to 2006, in the number of deaths statewide resulting from
aspiration pneumonia. As a result, these officials encouraged agency
staff statewide to closely examine hospitalization cases resulting from
pneumonia and to train care providers on risk factors to help prevent
this condition.
In 7 of the 14 states, developmental disabilities agencies provided
additional or enhanced training to staff statewide, and in 6 of the 14
states they developed new risk prevention interventions for providers
statewide. As a result of several choking deaths, the Connecticut
developmental disabilities agency developed a training program on
swallowing risks that addressed the responsibilities of providers when
caring for individuals with swallowing disorders. The agency also
required that all direct care staff who provided care to individuals
with developmental disabilities receive this training. Based on
mortality review findings, Oregon's developmental disabilities agency
developed an assessment tool to be completed and regularly updated on
individuals with developmental disabilities to identify and properly
address risks associated with deaths among this population, including
choking, dehydration, constipation, seizures, and falls. Several nurses
in Oregon told us that they believed the use of the risk assessment
tool had led to improvements in the quality of care provided to
individuals with developmental disabilities.
According to responses to our e-mail survey by the other 36 states, 19
state developmental disabilities agencies reported taking a statewide
action to improve care based on mortality information. When combined
with the 14 states in which we conducted interviews, 30 of 50 states
took a statewide action, while 20 did not. The most frequently cited
statewide actions nationwide--including the 36 states that completed
our e-mail survey--were the issuance of safety alerts, additional or
enhanced training of staff, and new risk-prevention practices. In
total, 60 percent of states nationwide addressed quality-of-care
concerns through such actions. Based on examples provided, choking was
the most frequently addressed quality-of-care concern nationwide. For
example, among states that reported taking a statewide action, 43
percent addressed choking with a statewide action, such as additional
training.[Footnote 32] Other quality-of-care concerns for which
multiple states took statewide actions included treating bowel
disorders, addressing problems with emergency procedures and
medications, and coordinating care across various providers and
settings.
Four of 14 States Publicly Report Mortality Information:
Four of the 14 states publicly reported mortality information by
publishing summaries of aggregated data or more detailed reports about
their mortality review processes and findings. For example, Ohio
annually reported aggregated mortality data on its agency Web site,
which included the number of deaths among individuals with
developmental disabilities and a list of the most common causes of
death. Massachusetts and Connecticut have posted annual mortality
reports on their agency Web sites, which included mortality statistics
for the population of individuals with developmental disabilities
served by their agencies as well as trend analyses of those deaths over
time. According to agency officials in Massachusetts, publicly
reporting information about mortality review findings helps to ensure
transparency in the mortality review process and demonstrates to the
public areas where the agency should direct its efforts to improve the
quality of care. While 10 of the 14 states we interviewed told us that
they do not make their findings publicly available, state officials in
California, Pennsylvania, and Washington told us that they had provided
such information to select stakeholders or to others when requested.
Conclusions:
Reviewing the deaths of individuals with developmental disabilities as
critical incidents in the Medicaid HCBS waiver program is one of
several mechanisms states can use to ensure that this vulnerable
population is protected from harm and to address quality-of-care
concerns. All 14 states whose officials we interviewed included death
among individuals with developmental disabilities as a critical
incident in their waiver programs. Nearly all of the 14 states had some
processes in place for conducting mortality reviews of individuals with
developmental disabilities, even though CMS does not have an
expectation for states to review deaths as critical incidents under the
waiver program. Most of the 14 states implemented basic components of
mortality review processes that experts we interviewed agreed were
important, such as the review of unexpected or suspicious deaths.
Several states also implemented additional components, such as using a
state-level interdisciplinary committee to review individual deaths and
routinely including external stakeholders, for more comprehensive
mortality review systems. We do not know the extent to which all
components were implemented in states we did not interview. However,
based on information provided by all states nationwide, (1) 13 states
did not aggregate mortality data (a basic component for mortality
reviews), (2) 26 states did not utilize an interdisciplinary mortality
review committee to review deaths among individuals with developmental
disabilities (an additional component), and (3) 20 states had not taken
a statewide action to improve care based on mortality review
information (an additional component). Moreover, the extent to which
states other than the 14 whose officials we interviewed identified
death as a critical incident has not been established.
Given the concern that agency officials may minimize identified program
weaknesses, routinely including external stakeholders--such as the
state office of protection and advocacy--is especially important
because it promotes accountability and independence to the state
mortality review process. When alerted to suspicious deaths, state
protection and advocacy agencies can conduct their own investigations,
but not all protection and advocacy agencies were systematically
notified of deaths by state developmental disabilities agencies and
instead relied on the less consistent or less timely notification of
deaths by the media or concerned family members.
Many of the states whose officials we interviewed told us that they
considered their mortality review system to be one aspect of their
strategy to improve the quality of care in their Medicaid HCBS
programs. CMS has recently made some important changes in an effort to
clarify its quality expectations for HCBS waivers, such as requesting
that states describe their quality improvement strategies as part of
the waiver application. In addition, a provision of the Deficit
Reduction Act of 2005 requires the development of specific quality
measures, and CMS may adopt the measures if it determines that they
reinforce the agency's expectations for states regarding quality
improvement.
Recommendations for Executive Action:
To help states identify and address quality-of-care concerns among
individuals with developmental disabilities receiving Medicaid HCBS
waiver services, we recommend that the Administrator of CMS take the
following two actions:
* Disseminate information to states about basic and additional
components for mortality reviews.
* Encourage states to:
- include death as a critical incident and conduct mortality reviews if
they do not already do so and:
- broaden their mortality review processes if they already include
death as a critical incident and conduct mortality reviews.
To provide additional oversight of the quality of care provided to
these individuals, we also recommend that the Administrator of CMS
establish as an expectation for HCBS waivers that state Medicaid
agencies report all deaths among individuals with developmental
disabilities receiving such waiver services to their state office of
protection and advocacy.
Agency Comments and Our Evaluation:
We obtained written comments from HHS on our draft report. HHS
generally concurred with two of our three recommendations, and did not
respond as to whether it agreed or disagreed with one recommendation.
HHS's comments are included in appendix III.
In its general comments, HHS stated that not all deaths in the
community are adverse events and that the ability to die at home with
appropriate supports is a positive outcome. Our report does not state
or suggest that all such deaths are adverse outcomes; however, we did
report that all deaths of individuals with developmental disabilities
served by Medicaid HCBS waiver programs should be screened to determine
whether further review is warranted. HHS also stated the importance of
ensuring that any actions taken to address our recommendations are
applicable to all populations served by HCBS waiver programs (e.g., the
aged) and not just individuals with developmental disabilities. While
the focus of our report was specifically on individuals with
developmental disabilities who are vulnerable and often have complex
medical needs, we support HHS's encouraging states to utilize mortality
reviews as one aspect of their quality improvement strategy for all
populations served by 1915(c) waiver programs.
Our evaluation of HHS's specific comments on each of our
recommendations follows.
Disseminate information to states about basic and additional components
for mortality reviews: HHS responded that CMS concurred with our
recommendation and will disseminate the information through its
stakeholders, including the National Association of State Directors of
Developmental Disabilities Services, the National Association of State
Medicaid Directors, and the National Association of State Units on
Aging. HHS also stated that CMS will involve these stakeholders in a
discussion on the topic of mortality reviews to help determine whether
the six basic components we identified are applicable to other
populations served by Medicaid 1915(c) waiver programs.
Encourage states to include death as a critical incident and conduct
mortality reviews if they do not already do so; and encourage states to
broaden their mortality review processes if they already include death
as a critical incident and conduct mortality reviews: HHS responded
that CMS concurred with this recommendation. However, the agency did
not fully address it. HHS's comments state that CMS will initiate a
meaningful dialogue with its stakeholders to encourage states' broader
use of processes to review suspicious deaths. As noted in our report,
however, screening mortality information about all deaths among
individuals with developmental disabilities is a basic component of a
mortality review system and is necessary to determine whether further
review of each death is warranted--including but not limited to those
deaths involving suspected abuse or neglect, or that were unexpected.
CMS did not directly address part of our recommendation that it should
encourage states that do not already do so to include death as a
critical incident. We continue to believe that this is important
because states are expected to report and review critical incidents and
take follow-up actions when a beneficiary is not being safeguarded. In
addition, states may use information from their critical incident
reviews to identify areas for improving care provided to waiver
beneficiaries.
Establish an expectation that state Medicaid agencies report all deaths
among individuals with developmental disabilities receiving waiver
services to their state's office of protection and advocacy: HHS did
not respond as to whether CMS agreed or disagreed with this
recommendation but recognized independent third-party reviews as
important. HHS also believes it is important that CMS's actions taken
to address our recommendations apply uniformly to all populations
served by 1915(c) waiver programs. According to a CMS official, the
agency's goal is to have a consistent set of expectations for all
waiver populations served instead of expectations tailored to specific
populations. The elderly would be one such population. Given this goal,
HHS commented that it may be difficult to require the reporting of all
deaths of individuals being served by these waiver programs to the
state offices of protection and advocacy because these offices focus
primarily on individuals with developmental disabilities. We continue
to believe that the state protection and advocacy agencies are the most
appropriate entities for reporting deaths among individuals with
developmental disabilities, a vulnerable population that often has
complex medical needs. However, in developing a uniform approach to
individuals served by waiver programs, we agree that CMS should focus
on the benefit of independence in the review process, recognizing that
it may not be appropriate for the same entities to be involved for all
populations served by waivers.
HHS also provided a technical comment and clarification, which we
responded to as appropriate.
As arranged with your office, unless you publicly announce its contents
earlier, we plan no further distribution of this report until 30 days
after its issue date. At that time, we will send copies of this report
to the Secretary of Health & Human Services, the Administrator of CMS,
and appropriate congressional committees. We will also make copies
available to others upon request. The report will also be available at
no charge on the GAO Web site at [hyperlink, http://www.gao.gov].
If you or your staff have any questions about this report, please
contact me at (202) 512-7114 or dickenj@gao.gov. Contact points for our
Offices of Congressional Relations and Public Affairs may be found on
the last page of this report. GAO staff who made major contributions to
this report are listed in appendix IV.
Sincerely yours,
Signed by:
John E. Dicken:
Director, Health Care:
[End of section]
Appendix I: Scope and Methodology:
To assess state mortality review processes for individuals with
developmental disabilities served by Medicaid HCBS waivers, we (1)
worked with experts in the field of developmental disabilities to
identify mortality review components, (2) collected detailed
information on death as a critical incident and mortality review
processes in 14 states, and (3) conducted a brief e-mail survey
focusing broadly on aspects of mortality review processes in the other
35 states and the District of Columbia.[Footnote 33] We did not
evaluate the effectiveness of state mortality review systems. However,
the data we collected allowed us to make comparisons across states and
to identify states with comprehensive mortality review processes.
Identification of Mortality Review Components:
To identify basic components of state mortality review processes, we
conducted a literature review, interviewed five experts in the field of
developmental disabilities, and reviewed documents authored by these
experts (e.g., a criteria-and-standards checklist for conducting
mortality reviews). These experts were either recommended by CMS
officials, referred to us by other officials that we interviewed during
the engagement, or were individuals we had contacted during a previous
engagement. Along with state developmental disabilities agency
officials who conduct mortality reviews, these experts also contributed
to the identification of additional components for more comprehensive
state mortality review processes. There may be other components for
mortality reviews that were not brought to our attention. In addition,
these experts guided our selection of states for on-site visits by
identifying states they knew to have well-established mortality review
processes.
Information on Death as a Critical Incident and Mortality Review
Processes from 14 States:
We collected information and interviewed officials about death as a
critical incident and mortality review processes for individuals with
developmental disabilities in 14 states. These 14 states served
approximately two-thirds of Medicaid waiver beneficiaries with
developmental disabilities nationally. The mortality review processes
of this sample of 14 states cannot be generalized to all states
nationwide.
First, we visited four states (Connecticut, Ohio, Oregon, and Texas) to
gain an understanding of state developmental disabilities systems and
mortality review processes and to facilitate the development of
interview protocols for the remaining 10 states. We used the following
criteria to select these four states: (1) the extent to which a state
had a well-established mortality review process, as recommended by
experts; (2) the raw number of individuals in a state with
developmental disabilities being served by Medicaid HCBS waivers
relative to other states; (3) the proportion of all individuals in a
state with developmental disabilities receiving services in the
community under Medicaid HCBS waivers rather than in institutions,
relative to other states; and (4) geographic variation.[Footnote 34]
During the four site visits, we collected and reviewed mortality review
documents such as policies and procedures, annual mortality review
reports, and health and safety alerts distributed to providers based on
mortality review findings. The officials we interviewed included
Medicaid directors, developmental disabilities agency medical directors
and administrators, members of state mortality review committees,
quality assurance and critical incident professionals, or other
professionals knowledgeable about the state's mortality review
processes. We also interviewed representatives from the state offices
of protection and advocacy or other external stakeholders involved in
these states' mortality review processes.
Second, to expand our understanding of how states review and use
mortality information, we collected similar information from and
conducted focused telephone interviews with developmental disabilities
officials in the other 10 states that served the largest number of
individuals with developmental disabilities through Medicaid HCBS
waivers.[Footnote 35] We also conducted focused telephone interviews
with officials from state protection and advocacy agencies in these 10
states and in the District of Columbia.[Footnote 36]
E-Mail Survey to the Remaining 35 States and the District of Columbia:
We sent a three-question e-mail survey that focused on three aspects of
state mortality review processes to developmental disabilities agency
officials in the other 35 states and the District of Columbia.
Specifically, we asked agency officials if they had a statewide
interdisciplinary mortality review committee, if they aggregated
mortality information for this population, and if they had implemented
a statewide action based on mortality review findings. We focused on
these three issues because of the value identified by experts and state
officials in (1) using an interdisciplinary approach to reviewing
certain deaths, (2) using aggregated data in addition to individual
mortality cases to identify trends or patterns of deaths among
individuals with developmental disabilities, and (3) using mortality
information to take statewide actions to improve the system of care
overall. We followed up with nonrespondents using e-mail reminders and
telephone calls, and achieved a 100 percent response rate to our
survey.
[End of section]
Appendix II: Description of More Comprehensive Mortality Review Systems
Implemented by Four States:
Program structure: Structure of HCBS waiver program providing services
to individuals with developmental disabilities;
Connecticut:
* Regional developmental disabilities agency directors oversee
operational aspects of the local provision of waiver services to
individuals with developmental disabilities. Regional directors report
to state's central developmental disabilities office, which provides
oversight to the regions;
Massachusetts:
* Four regional developmental disabilities offices manage 23 local area
offices responsible for managing and monitoring services provided to
individuals with developmental disabilities. State's central
developmental disabilities office provides oversight to regional and
local area offices;
Minnesota:
* County-based developmental disabilities officials in 87 county
offices provide operational oversight of the local provision of waiver
services to individuals with developmental disabilities. State's
central developmental disabilities office provides oversight to the
counties;
Ohio:
* County-level developmental disabilities agency staff oversees the
local provision of waiver services to individuals with developmental
disabilities. State's central office provides oversight to 88 county
developmental disabilities agency offices.
Components of mortality review process: Process for standardized
screening of individual deaths (basic component);
Connecticut:
* Regional developmental disabilities officials collect and screen
standardized information about deaths among persons with developmental
disabilities, including demographic information, location and cause of
death, and whether the death was anticipated or unexpected;
* If a death is considered suspicious for abuse or neglect, appropriate
authorities are notified to ensure the safety of other community-based
residents or to initiate a criminal investigation, as appropriate;
Massachusetts:
* Standard information about deaths among persons with developmental
disabilities is collected and screened by area and state-level agency
staff. This information includes cause and manner of death, whether the
death was unexpected or occurred under suspicious circumstances, the
level of mental retardation (including whether the individual had
Down's syndrome), and whether or not the medical examiner took
jurisdiction over the body;
* If a death is considered suspicious for abuse or neglect, appropriate
authorities are notified to ensure the safety of other community-based
residents or to initiate a criminal investigation, as appropriate;
Minnesota:
* County-level developmental disabilities officials collect and screen
standardized information about deaths among persons with developmental
disabilities, including demographic information, location and cause of
death, circumstances of the death, and the clinical diagnoses of the
deceased;
* If a death is considered suspicious for abuse or neglect, appropriate
authorities are notified to ensure the safety of other community-based
residents or to initiate a criminal investigation, as appropriate;
* The Office of the Ombudsman for Mental Health and Developmental
Disabilities also screens standardized information about deaths among
persons with developmental disabilities;
Ohio:
* County-level investigative agents for the developmental disabilities
agency collect standard information about deaths among persons with
developmental disabilities, including location of death, whether the
death was unexpected, and circumstances surrounding the death;
* If a death is considered suspicious for abuse or neglect, appropriate
authorities (including the county coroner) are notified to ensure the
safety of other community-based residents or to initiate a criminal
investigation, as appropriate.
Components of mortality review process: Types of deaths routinely
reviewed (basic component);
Connecticut:
* All unexpected or suspicious deaths among individuals with
developmental disabilities receiving community care by the state
developmental disabilities agency are routinely reviewed at a regional
level. Nonsuspicious and expected deaths are also reviewed at the
regional level;
Massachusetts:
* All unexpected or suspicious deaths among individuals with
developmental disabilities receiving more than 15 hours of residential
support, or who die in a day support or habilitation program or who die
during transportation arranged by the state developmental disabilities
agency, are routinely reviewed. Nonsuspicious and expected deaths among
this population are also routinely reviewed but at the regional level;
Minnesota:
* All deaths among individuals with developmental disabilities
receiving community care by the state developmental disabilities agency
are reviewed at the county and state levels. Deaths under suspicion for
involving abuse or neglect are also reviewed by county-based
investigators;
Ohio:
* All unexpected or suspicious deaths among individuals with
developmental disabilities receiving community care by the state
developmental disabilities agency are routinely reviewed. Nonsuspicious
and expected deaths among this population receive a less-extensive
review at the state level.
Components of mortality review process: Medical professionals included
in mortality review process (basic component);
Connecticut:
* Regional reviewers include developmental disabilities nurse
investigators and members of the regional mortality review committee,
which is composed of (at a minimum) a registered nurse not employed by
the developmental disabilities agency, the regional office health
services or nursing director, the case management supervisor, the
quality improvement director, and a client advocate. In addition,
regional reviews may also include the nurse investigator, the former
case manager of the deceased, and a nurse involved with the person's
care prior to death;
Massachusetts:
* Regional reviewers include developmental disabilities agency nurses
and members of the regional mortality review committee, which is
composed of (at a minimum) a nurse or physician, or both, and an agency
quality assurance professional. In addition, regional mortality review
discussions may also include additional regional nurses or area office
directors or assistant directors;
Minnesota:
* County reviewers include primarily case managers but also nurses or
other developmental disabilities officials with previous experience
providing direct services to individuals with developmental
disabilities. These professionals consult with public health nurses or
the agency medical director, as needed, to complete their reviews;
Ohio:
* County-level investigative agents include registered nurses, case
workers, or licensed social workers. These agents consult with
physicians on the statewide mortality review committee, as needed, if
they have questions during the course of their local-level mortality
review.
Components of mortality review process: Local-level mortality review
process (basic component);
Connecticut:
* Developmental disabilities agency nurse investigators covering the
regions conduct desk reviews into the circumstances surrounding the
death; interview parties associated with the death; review medical
professional progress notes and autopsy reports; and provide this
information to the regional mortality review committees in a written
report;
* The regional mortality review committee reviews the overall care,
quality-of-life issues, and health care preceding the death of each
individual with developmental disabilities. This committee may close
the case or refer it to the state-level review committee;
Massachusetts:
* Local area nurses conduct desk reviews and complete mortality review
forms addressing the circumstances surrounding the death and the
overall care provided prior to death, including but not limited to
medical and medication histories, functional status of the individual,
and information from death certificates and autopsy reports, when
available. Local area nurses also interview care providers;
* The regional mortality review committees discuss the area nurses'
reviews and determine if a death should be referred to the state-level
mortality review committee;
Minnesota:
* County-level developmental disabilities case managers or other
reviewers conduct desk reviews into the circumstances surrounding the
death and review medical professional progress notes from the direct
care provider(s), when available. These officials share their reviews
with county-level developmental disabilities managers;
* County-level investigators conduct independent reviews of cases that
are suspicious for abuse or neglect;
Ohio:
* County-level investigative agents collect and review 14 standard
pieces of information on each case to determine if the case warrants
further review of quality-of-care concerns.[A] This information
includes but is not limited to medical diagnoses prior to death; death
certificate; narrative surrounding the circumstances of death; at least
72 hours' worth of caregiver notes prior to time of death; medication
use; and autopsy findings or coroner's report, as appropriate;
* County-level investigative agents can specifically refer a case to
the state-level interdisciplinary committee for discussion.
Components of mortality review process: Documenting mortality review
process, findings, or recommendations (basic component);
Connecticut:
* The statewide mortality review committee documents and maintains its
findings and recommendations on a standard form;
Massachusetts:
* The mortality review committee documents its mortality review
process;
Minnesota:
* The state-level mortality review committee documents its meetings,
including the agenda and recommendations;
Ohio:
* Findings and recommendations from the mortality review process are
documented in the incident tracking system.
Components of mortality review process: Data aggregation (basic
component);
Connecticut:
* Mortality data are aggregated on the basis of the following factors:
cause of death, age, location of death, gender, program service type,
the individual's level of functioning, and service delivery
provider(s);
* The state developmental disabilities agency and the mortality review
committee review aggregated data and assess trends over time in the
leading causes of death among individuals with developmental
disabilities;
Massachusetts:
* Mortality data are aggregated on the basis of the following factors:
cause of death, age, location of death, gender, and program service
type;
* The state developmental disabilities agency assesses trends over time
in the leading causes of death among individuals with developmental
disabilities;
Minnesota:
* Mortality data are aggregated on the basis of the following factors:
cause of death, age, and service delivery provider;
* The state developmental disabilities agency assesses trends over time
and analyzes aggregated mortality data;
Ohio:
* Mortality data are aggregated on the basis of the following factors:
cause of death, age, location of death, gender, program service type,
level of functioning, and county;
* The state developmental disabilities agency and mortality review
committee assess trends over time in the leading causes of death for
individuals with developmental disabilities;
* Each county has a designated quality assurance person(s) responsible
for identifying and discussing critical incident trends (including
deaths) with other county-or state-level quality assurance
professionals.
Components of mortality review process: Medical and other
interdisciplinary professionals included in the state-level mortality
review committee (additional component);
Connecticut:
* Committee membership includes directors of Health and Clinical
Services, Quality Assurance, and Investigations for the developmental
disabilities agency; the state medical examiner; a physician; a
supervising nurse consultant from the Department of Public Health; two
individuals appointed by the protection and advocacy agency; and a
director of nursing from the developmental disabilities agency;
Massachusetts:
* Committee membership includes the following professionals from the
developmental disabilities agency: physicians, nurses, quality
assurance officials, and legal staff. Membership also includes
representatives from the public health department and investigative
unit, pharmacists, and members of the office of protection and advocacy
and the stakeholder group Disabled Persons Protection Commission;
Minnesota:
* Committee membership includes a psychiatrist, forensic pathologist,
registered nurse, pharmacist, internist, and a quality assurance
official from the state developmental disabilities agency;
Ohio:
* Committee membership includes physicians; professionals with
expertise in the field of developmental disabilities; state protection
and advocacy agency and other advocacy organization representatives;
and state agency officials from the critical incident management,
quality assurance, and licensure divisions.
Components of mortality review process: State-level mortality review
committee (additional component);
Connecticut:
* State developed a state-level interdisciplinary independent mortality
review committee in 2002 specifically to review deaths of individuals
with developmental disabilities;
* The committee operates at the state level to provide an independent
review by qualified professionals unrelated to the deceased and ensures
that regional reviewers fully evaluated the health and overall care
provided to the individual, including quality-of-life issues. The
committee identifies both regional and systemic issues, and makes
recommendations and identifies corrective actions accordingly;
* The committee discusses all cases identified by the regional review
committees as needing further discussion and also reviews at least 10
to 15 percent of those cases closed at the regional level for quality
assurance purposes-- i.e., to ensure consistency in the review process
throughout the state and ensure that cases do not escape scrutiny in
terms of quality-of-care or systemic issues;
* The committee meets at least quarterly and more frequently as
necessary;
Massachusetts:
* State established a state-level interdisciplinary mortality review
committee in 1999 specifically to review deaths of individuals with
developmental disabilities;
* The committee operates at the state level as part of the
developmental disabilities agency's quality management strategy. The
committee uses its findings through the mortality review process to
improve the quality of care and supports provided by the developmental
disabilities agency to persons with developmental disabilities;
* The committee discusses all deaths that meet set criteria for review,
including but not limited to those deaths that are sudden,
unanticipated, or accidental; or those related to accidental choking,
bowel impaction, or an adverse drug event. The committee also reviews
any other cases referred to it by the regional committees because of
other concerns identified. It also reviews 10 percent of those cases
closed at the regional level for quality assurance purposes--to ensure
consistency across regions and the closure of appropriate cases--and
routinely reviews nonsuspicious or expected deaths;
* The committee meets every other month;
Minnesota:
* State established a state-level interdisciplinary mortality review
committee in 1987 to systematically review deaths of individuals
receiving services or treatment for developmental disabilities, mental
illness, chemical dependency, or emotional disturbance;
* The committee is overseen by the Office of the Ombudsman for Mental
Health and Developmental Disabilities. It is designed to objectively
and systematically monitor circumstances surrounding deaths and to
provide an opportunity to evaluate quality of care from an individual
and systemwide perspective;
* The committee uses established criteria to determine which types of
deaths it will review in-depth. For example, it reviews deaths that may
have resulted from undiagnosed conditions or delayed medical care as
well as those that may be related to abuse or neglect. The committee
also reviews cases where family members have requested a review;
* In contrast to the more in-depth reviews conducted by the committee,
a registered nurse within the Office of the Ombudsman reviews all
deaths among individuals with developmental disabilities using a less
comprehensive procedure;
* The committee meets monthly;
Ohio:
* State established a state-level interdisciplinary mortality review
committee in 2001 specifically to review deaths of individuals with
developmental disabilities;
* This committee operates at the state level to review all deaths of
such individuals to identify and address any case-specific, facility-
specific, or systemwide issues that could improve the care provided to
other individuals in this community;
* Physician members of the committee review reports submitted by county-
level investigative agents on all deaths and may close out the case or
refer it to the full committee for discussion when quality-of-care
concerns are identified. The committee also discusses cases referred to
it by county-level investigative agents;
* The committee meets quarterly and reviews mortality information on
selected developmental disabilities deaths as well as quarterly and
annual trends in mortality.
Components of mortality review process: Process for making information
publicly available (additional component);
Connecticut:
* The state makes public its annual mortality review report and other
mortality data on its developmental disabilities agency Web site;
Massachusetts:
* The mortality review committee makes mortality information available
publicly on its developmental disabilities agency Web site. It
distributes mortality information to the Governor's office, advocacy
organizations, regional and area developmental disabilities staff, and
providers;
* The mortality review committee also presents its findings annually to
the agency's quality councils;
Minnesota:
* The Office of the Ombudsman makes public a biannual report to the
Governor on the Ombudsman's Web site, which includes information on the
number of deaths and their causes;
Ohio:
* Through an electronic incident tracking system, information about
each death, including local-and state-level reviews, is available to
providers and developmental disabilities agency professionals across
the state and to the state's protection and advocacy agency;
* Directors' alerts disseminate critical information related to
particular deaths to providers and other stakeholders through the
electronic incident tracking system and are required to be reviewed by
all developmental disabilities agency employees as part of annual
training;
* Basic mortality data are posted on the agency's Web site.
Components of mortality review process: Mechanisms for achieving
independence by routinely including external stakeholders in mortality
review process (additional component);
Connecticut:
* The state protection and advocacy agency receives information weekly
about deaths among individuals with developmental disabilities;
* By the Governor's Executive Order, an independent fatality review
board was created and is housed in the state's protection and advocacy
agency to conduct independent mortality reviews, "outside" of the
developmental disabilities agency;
Massachusetts:
* The state protection and advocacy agency is notified of deaths among
individuals with developmental disabilities who were receiving services
from the state developmental disabilities agency. The protection and
advocacy agency rarely conducts its own investigation of these deaths
because of the reviews being conducted by both the developmental
disabilities agency and the Disabled Persons Protection Commission,
which the protection and advocacy agency helped establish to protect
individuals with developmental disabilities;
* The Disabled Persons Protection Commission is a state government
entity independent of the state developmental disabilities agency. It
is notified by the agency of all deaths and conducts investigations of
some deaths (e.g., unexpected deaths or those considered suspicious for
abuse or neglect). A representative from the commission also sits on
the agency's state-level mortality review committee;
Minnesota:
* The state does not systematically report information about deaths
among individuals with developmental disabilities to the state
protection and advocacy agency;
* The protection and advocacy agency can conduct investigations of
deaths on a case-by-case basis;
* The Office of the Ombudsman provides independence to the review of
deaths because the office is a state entity independent of the
developmental disabilities agency;
Ohio:
* The state protection and advocacy agency has direct access to the
electronic incident tracking system, which includes information on all
deaths among persons with developmental disabilities as well as
mortality review information;
* The protection and advocacy agency and another active developmental
disabilities advocacy organization in the state participate as standing
members on the statewide mortality review committee.
Components of mortality review process: Statewide actions taken to
improve quality of care systemwide, based on mortality review findings
(additional component);
Connecticut:
* In 2006, after several individuals with developmental disabilities
died from preventable choking incidents, the developmental disabilities
agency initiated a statewide safety campaign with a focus on swallowing
disorders as an area of risk. In 2007, the state developmental
disabilities agency required that all current direct care staff receive
ongoing training on swallowing disorders and that all service delivery
providers have internal policies about how they will identify and
manage swallowing risks for individuals with developmental disabilities
that they serve;
Massachusetts:
* Upon finding a higher mortality rate for female breast cancer in the
developmentally disabled population compared with other populations, in
2005 the state developmental disabilities agency began developing
computer-based training targeted to direct care staff on preventive
screenings, including cancer screenings;
* Based on reviews of several individuals with developmental
disabilities whose deaths involved swallowing disorders, the agency
developed protocols in 2006 on how to treat swallowing disorders and
trained direct care staff on symptoms and treatment;
Minnesota:
* In 2007, after several individuals developed a serious condition or
died prior to receiving treatment, the developmental disabilities
agency sent an alert to service providers with recommendations to
reduce the likelihood of similar incidents. For example, the alert
recommended that programs authorize caregivers to call 911 without
approval from a management staff person when a medical emergency is
suspected;
Ohio:
* The state's developmental disabilities agency issued a safety alert
on choking in 2006 because of concerns about an increased number of
deaths from choking that occurred in 2006 compared with 2005. Based on
a trend in unplanned hospitalizations related to pneumonia, and higher
death rates from aspiration pneumonia than in previous years, the
agency issued a safety alert in 2006 about pneumonia and encouraged the
use of vaccinations to prevent similar deaths.
Source: GAO analysis.
Note: To develop this table, GAO analyzed information provided and
verified by state developmental disabilities agency officials in
Connecticut, Massachusetts, Minnesota, and Ohio.
[A] For the following types of deaths, investigative agents collect and
review 4 rather than 14 pieces of standardized information: persons
residing in a facility (e.g., nursing home or intermediate care
facility for the mentally retarded licensed by agencies other than the
developmental disabilities agency); children and adults who had been
living at home and died while in the hospital; and persons with cancer
or who died while receiving hospice services.
[End of table]
[End of section]
Appendix III: Comments from the Department of Health & Human Services:
Department Of Health & Human Services:
Office of the Assistant Secretary for Legislation:
Washington, D.C. 20201:
May 1, 2008:
Mr. John Dicken:
Director, Health Care:
Government Accountability Office:
441 G Street, NW:
Washington, DC 20548:
Dear Mr. Dicken:
Enclosed are the Department's comments on the U.S. Government
Accountability Office's (GAO) Draft Report, "Medicaid Home And
Community-Based Waivers: CMS Should Encourage States to Conduct
Mortality Reviews for Individuals with Developmental Disabilities" (GAO-
08-529).
The Department appreciates the opportunity to review and comment on
this report before its publication.
Sincerely,
Signed by:
Jennifer R. Loung, for:
Vincent J. Ventimiglia, Jr.
Assistant Secretary for Legislation:
Attachment:
General Comments Of The Department Of Health And Human Services (HHS)
On The U.S. Government Accountability Office's (GAO) Draft Report
Entitled: "Medicaid Home And Community-Based Waivers: CMS Should
Encourage States To Conduct Mortality Reviews For Individuals With
Developmental Disabilities"(GAO 08-5291):
The Department appreciates GAO's attention to home and community-based
services (HCBS) waivers and CMS' efforts to ensure the well-being of
individuals served. This report provides useful information regarding
the approaches utilized by waiver programs serving individuals with
intellectual disabilities and developmental disabilities (ID-DD)
relative to mortality reviews for those specific disability
populations.
While your report expressly targets individuals with mental retardation
and developmental disabilities, the 1915(c) waiver program includes a
broader scope of participants who require long-term care and who meet
the requirements for an institutional level of care. In our mission to
assure that individuals with disabilities have access to independent
living in settings of their choice, we reinforce and encourage the GAO
to recognize that all deaths in the community are not adverse events;
in fact, the ability to die at home with appropriate supports is a
positive outcome. Deaths that occur from poor quality services and
supports, or the absence of necessary services and supports, are
adverse events that we expect State waiver programs to identify and
address.
In reviewing the recommendations and determining our responses, we
considered the importance of assuring that our actions were applicable
to all populations served in the 191.5(c) waiver program, including but
not limited to, those with ID-DD. Your recommendations and our
responses are provided below.
GAO Recommendation:
The GAO recommends that CMS disseminate information to States about the
components of mortality reviews and encourage States to conduct
mortality reviews or broaden existing mortality review processes.
HHS Response:
The CMS concurs with this recommendation and will disseminate
information through our stakeholders, including the National
Association of State Medicaid Directors, the National Association of
State Directors of Developmental Disabilities Services, and the
National Association of State Units on Aging, and engage them in a
discussion regarding this topic. Since the 2003 GAO report, CMS has
actively engaged States and the Associations in the development and
design of mechanisms to improve the quality in home and community-based
services waivers. This approach has yielded significant improvements in
the 1915(c) waiver application process, the waiver quality review
process, as well as the process for providing technical assistance to
States regarding their quality improvement strategies. Furthermore,
this approach has enabled the development of policies that apply to all
populations served in the 1915(c) waiver program, while providing
States the flexibility to design elements specific to meet the needs of
particular populations.
The CMS will utilize this forum to gain necessary information regarding
the costs of mortality review processes, as well as the identification
of strategies that may be used for populations other than ID-DD. CMS
will utilize this approach to determine whether the GAO-identified six
basic mortality review components have general applicability to persons
with physical disabilities, persons who are aging, persons with
terminal illnesses, and other populations served by the HCBS waiver
program.
In summary, CMS will initiate a meaningful dialogue to encourage the
broader use of processes to review suspicious deaths as an important
element of a State's overall Quality Improvement Strategy for the
waiver.
GAO Recommendation:
The GAO recommends that CMS establish an expectation that States report
all deaths to State protection and advocacy agencies.
CMS Response:
The protection and advocacy systems contained in each State emanate
from the Developmental Disabilities Assistance and Bill of Rights Act
of 2000 (also known as the DD Act). These programs are administered by
the Administration on Developmental Disabilities. The DD Act provides
for a program to support a Protection & Advocacy (P&A) System in each
State, and Territory, as well as a Native American Consortium, to
protect and advocate for persons with developmental disabilities. All
States, Territories, and a Native American Consortium (total of 57) are
funded under the Protection & Advocacy for Individuals with
Developmental Disabilities (PADD) program that requires the governor to
designate a system in the State to empower, protect, and advocate on
behalf of persons with developmental disabilities. This P&A system
implementing the PADD program must be independent of service-providing
agencies. [Footnote 37] As these entities focus primarily on
individuals with developmental disabilities and, in some States,
individuals with chronic mental illness, it may be difficult for CMS to
require this uniformly. However, the GAO's message regarding the
importance of independent, third-party review is important. In our
discussions with the aforementioned stakeholders, CMS will collaborate
with them regarding strategies to effectuate a system of independent
review across waivers and for various populations.
In closing, HHS would like to thank the GAO and its staff for this
informative report. We appreciate the GAO's continued interest in the
HCBS waiver program and for the vigilance in ensuring that strong
systems are in place to guarantee the health and welfare of all
vulnerable populations served through the program.
[End of section]
Appendix IV: GAO Contact and Staff Acknowledgments:
GAO Contact:
John E. Dicken, (202) 512-7114 or dickenj@gao.gov:
Acknowledgments:
In addition to the contact named above, key contributors to this report
were Walter Ochinko, Assistant Director; Stefanie Bzdusek; Pamela
Dooley; Sara Imhof; Elizabeth T. Morrison; and Andrea E. Richardson.
[End of section]
Footnotes:
[1] Throughout this report we refer to individuals with mental
retardation or who have other developmental disabilities as individuals
with developmental disabilities.
[2] 42 U.S.C. § 1396n(c)(2000).
[3] Prior to the waiver program, states had traditionally provided the
majority of services for this population in institutional care settings
such as intermediate care facilities for the mentally retarded (ICF/
MR). In 2006, the majority of individuals with developmental
disabilities served by Medicaid waivers--excluding those living in
private homes with relatives--lived in residential settings, such as
group homes, with six or fewer residents. However, ICF/MRs still play a
significant role in providing long-term care services to persons with
developmental disabilities, especially those with the greatest care
needs who may not be able to live in the community. In 2004, about
100,000 individuals received care in ICF/MRs.
[4] GAO, Long-Term Care: Federal Oversight of Growing Medicaid Home and
Community-Based Waivers Should Be Strengthened, [hyperlink,
http://www.gao.gov/cgi-bin/getrpt?GAO-03-576] (Washington, D.C.: June
20, 2003).
[5] These states are California, Connecticut, Florida, Iowa, Illinois,
Massachusetts, Minnesota, New York, Ohio, Oregon, Pennsylvania, Texas,
Washington, and Wisconsin.
[6] We limited our review to adults (as defined by each state) with
developmental disabilities receiving Medicaid HCBS waiver services.
[7] We collected information from 49 states and the District of
Columbia. Throughout this report, we refer to the District of Columbia
as a state. We excluded Arizona because it supported services for the
developmentally disabled through a demonstration project waiver under
section 1115 of the Social Security Act rather than a home and
community-based services waiver under section 1915(c).
[8] The role of a protection and advocacy agency is to protect the
legal and human rights of people with developmental disabilities.
Although the District of Columbia was not in our sample of 14 states,
we contacted this protection and advocacy agency because of local media
reports about deaths resulting from alleged abuse or neglect among
individuals with developmental disabilities.
[9] States can target their developmental disability waiver programs
specifically to individuals with mental retardation or to persons with
any type of developmental disability.
[10] The Kaiser Commission on Medicaid and the Uninsured, Medicaid Home
and Community-Based Service Programs: Data Update (Washington, D.C.:
December 2007), [hyperlink, http://www.kff.org/medicaid/7720.cfm]
(accessed May 6, 2008).
[11] Arizona did not operate a 1915(c) waiver for individuals with
developmental disabilities (see footnote 7).
[12] The average cost of community care under a waiver cannot exceed
the average cost of care in an institution.
[13] Other assurances include determining level of care needs and
financial accountability.
[14] For each assurance required under section 1915(c) waivers, CMS has
identified expectations for how states will provide these assurances,
including expectations for the types of evidence that states submit on
their applications to demonstrate the assurances are met.
[15] State definitions of critical incidents are generally specified in
state-specific statutes or regulations.
[16] A serious injury that requires medical intervention or results in
hospitalization is another example of an event that states may include
in their definition of a critical incident.
[17] See 42 U.S.C. § 1396n(c)(3).
[18] [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-03-576].
[19] CMS officials told us that multiple states initially resisted
providing information about their quality improvement strategies on the
waiver application. For one of these states, CMS requested quarterly
reports about the state's quality improvement strategy as a condition
of approval.
[20] Pub. L. No. 109-171, §6086(b), 120 Stat. 4, 127 (2006).
[21] Pub. L. No. 94-103, 89 Stat. 486 (codified, as amended, at 42
U.S.C. § 15043).
[22] Most protection and advocacy agencies are private nonprofit
organizations.
[23] Some states also specifically require the reporting of any deaths
resulting from abuse or neglect.
[24] Pancreatitis is an acute or chronic inflammation of the pancreas,
the organ that produces hormones to help regulate blood sugar levels,
metabolism, and digestion. Pancreatitis may be caused by certain
medications.
[25] An advantage of developmental disabilities agency case workers and
nurses conducting mortality reviews locally is that they are more
familiar with the provision and monitoring of beneficiaries' care than
officials at the state level.
[26] Similar to the basic components, additional components were
identified based on a review of documents authored by these experts and
a literature review.
[27] Developmental disabilities agency officials told us they
distributed safety alerts by e-mail and postal mail.
[28] Oregon and Pennsylvania did not have state-level interdisciplinary
mortality review committees, but the Medical Directors for the
developmental disabilities agencies in both states reviewed deaths of
individuals with developmental disabilities as part of their state-
level review process.
[29] Another advantage of state-level reviewers is that they are more
likely than local reviewers to take a systems-based perspective because
of their hierarchical placement within the developmental disabilities
agency.
[30] In addition, state officials in California, Florida, Iowa, and
Oregon told us that external stakeholders, such as the state protection
and advocacy agencies, were included on an as-needed basis for certain
mortality reviews.
[31] Evans v. Fenty, 480 F.Supp.2d 280, 310 (D.D.C. 2007).
[32] Individuals with developmental disabilities who have swallowing
risks often rely on caregivers to prepare special meals, such as pureed
foods, and to assist them in eating.
[33] We collected information from 50 states, including the District of
Columbia. We excluded Arizona because it supported services for
individuals with developmental disabilities through a demonstration
project waiver under section 1115 of the Social Security Act rather
than a home and community-based services waiver under section 1915(c).
[34] We selected Connecticut because it was the state most frequently
identified by experts as having a well-established mortality review
process. We selected Ohio because experts told us that it also had a
well-established mortality review process, had a relatively large
number of individuals with developmental disabilities receiving
Medicaid HCBS waiver services, and varied geographically from
Connecticut. To select our third and fourth site-visit states, we
focused on states that (1) had a high proportion of individuals with
developmental disabilities being served in the community by Medicaid
HCBS waivers rather than in institutions and (2) had geographic
variation. We selected Oregon because it ranked in the top 25 percent
of all states for the proportion of individuals with developmental
disabilities served in the community on waivers, had a large number of
Medicaid waiver beneficiaries relative to other states in the top
quartile, and was in a different census region and was monitored by a
different CMS regional office than Connecticut and Ohio. Finally, we
selected Texas for its geographic variation and large number of
individuals with developmental disabilities receiving Medicaid HCBS
waiver services.
[35] These states are California, Florida, Iowa, Illinois,
Massachusetts, Minnesota, New York, Pennsylvania, Washington, and
Wisconsin.
[36] The District of Columbia was not 1 of the 10 states in which we
conducted focused telephone interviews. We contacted this protection
and advocacy agency because of local media reports and legal actions
directed toward the District's developmental disabilities agency
regarding deaths resulting from alleged abuse or neglect among
individuals with developmental disabilities living in community
residential settings.
[37] Administration on Developmental Disabilities. State Protection and
Advocacy Agencies Systems Fact Sheet.
[End of section]
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