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3995 Action Alert
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VOR Weekly E-Mail Update
July 25, 2008
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A closer look at
tracking mortality in community settings
TABLE OF CONTENTS
1. Summary: Deaths of developmentally disabled in home-care
settings should get closer reviews: GAO
2. GAO RESULTS IN BRIEF
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1. Summary: Deaths of developmentally disabled in home-care
settings should get closer reviews: GAO
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Summary: Last
week’s VOR Weekly Update shared news of a new Government
Accountability Office (GAO) report which considered mortality in
home-care settings. GAO’s July 09, 2008 indicated that states
should more thoroughly investigate deaths of people with
developmental disabilities who were receiving home- and
community-based services for care. Specifically, GAO said that
the the Centers for Medicare & Medicaid Services should pressure
states to review such deaths more closely, the Government
Accountability Office says. "Concerns about deaths resulting
from poor quality of care and inadequate oversight of
individuals with developmental disabilities receiving
community-based care," compelled Sen. Charles Grassley (R-IA) to
request the report (GAO-08-529).
The 14 states included in the report are:
California,
Connecticut
Florida
Illinois
Iowa
Massachusetts
Minnesota
New York
Ohio
Oregon
Pennsylvania
Texas
Washington
Wisconsin
This news warranted additional coverage in VOR’s Update. The
full report can be found at www.gao.gov/new.items/d08529.pdf.
The Results in Brief directly from the report follow:
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2. GAO RESULTS IN BRIEF
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MEDICAID HOME AND COMMUNITY-BASED WAIVERS: CMS Should Encourage
States to Conduct Mortality Reviews for Individuals with
Developmental Disabilities
GAO-08-529
May 2008
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 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.
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.
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Tamie Hopp
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