Sample Mortality Reports

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Sample Mortality Reports Issued by the State of
Connecticut Department of Mental Retardation
September 2002 March 2003 October 2003
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Health and Mortality ANNUAL REPORT Issued
NOVEMBER 2002
This is the first of a series of semiannual
reports on trends and related information
pertaining to the health and quality of care
received by individuals with mental retardation
served by the Connecticut State Department of
Mental Retardation. Future reports are scheduled
for March and September of each year. September
reports will focus on an analysis of annual data,
with a special emphasis on mortality trends.
March reports will focus on any significant or
special trends, new initiatives and important
news and information related to mortality and
risk reduction.
For the Period July 1, 2001 to June 30,
2002
Overview of DMR
Mental retardation is a developmental disability
that is present in about 1 of the Connecticut
population. In order for a person to be eligible
for DMR services they must have significant
deficits in intellectual functioning and in
adaptive behavior, both before the age of 18-yrs.
DMR is also the lead agency for the Birth to
Three System in Connecticut. This system serves
infants and toddlers with developmental delays.
Altogether, DMR assists almost 19,500 individuals
and their families, providing a broad array of
services and supports.
THE PEOPLE SERVED BY DMR Includes Birth to Three
children.
DMR provides or funds residential supports
for 6,621 people.
7,186 individuals living at home without formal
residential support
Less than half (38) of the people we
serve 7,394 live in residential settings
62 of the people we serve 12,034 live in their
own homes or with family without residential
support
Residential services for an additional 773
people are funded by other sources.
4,848 children living at home and receiving only
Birth to Three services
as of 6/30/02
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Health Mortality Review ANNUAL REPORT September
2002
Mortality Trends
An important component of the risk management
systems present within DMR involve the analysis
and review of deaths to identify important
patterns and trends that may help increase
knowledge about risk factors and provide
information to guide system enhancements.
Consequently, DMR collects information on the
death of all individuals served by the
department. The following section provides a
general description of the results of this
analysis for Fiscal Year 2002 (July 2001 through
June 2002).
Mortality and Residence During the 12 month time
period between July 1, 2001 and June 30, 2002 a
total of 178 out of the 19,500 individuals
served by DMR passed away. As can be seen in
the graph to the right approximately half died
while being served in a residential setting
operated, funded or licensed by DMR (blue
section). The other half were living at home
(family home or independently), in a
long-term care facility (e.g., nursing home), or
other non-DMR setting . This general pattern is
consistent with that observed last fiscal year,
although there was a slight reduction in the
relative percentage of deaths that occurred in
CLAs, Supported Living and Long-Term Care
facilities. The average Death Rate is expressed
as the no. of deaths per 1000 people served. It
compares the number of deaths to the number of
persons served in each type of setting (no.
deaths /population X1000), and continues to show
a predictable pattern In general, the higher
need for specialized care, the higher the average
rate of death.
Type of Residential Support At Time of Death
This graph shows the number of people
who died for every 1000 people served in each
type of setting. The settings to the left tend
to provide less comprehensive care and support
than the settings to the right. This often
reflects the level of disability and specialized
care needs of the people who generally live in
each type of setting. For example, persons living
in LTC (nursing homes) tend to be older than
other people served by DMR, and, usually went to
a nursing home because they needed skilled
nursing care. Their death rate is much
higher than for other people served by DMR.
In this report we use the term average death
rate to reflect what is more commonly referred
to as the crude death rate in mortality and
epidemiological research.
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Health Mortality Review ANNUAL REPORT September
2002
Health Mortality Review ANNUAL REPORT September
2002
The two graphs to the right compare the number of
deaths within the population served by DMR and
the average death rate for fiscal years 2001 and
2002. As can be seen, FY02 experienced a slight
decrease in both measures.
This graph compares the death rate (the
number deaths per 1000 persons served) for
fiscal year 2002 with that for last fiscal year
(FY2001) by type of residential setting. Small
differences can be seen, with the rate
decreasing for persons living in CLAs (group
homes) and in Campus settings (STS and regional
centers). The most pronounced decrease occurred
for persons receiving Supported Living
services. Slight increases in the mortality
rate occurred for persons living in
Long-Term- Care facilities and their family homes
Caution must be exercised in reviewing this data
since the actual number of deaths in each of
these settings was relatively small. The
differences across this time period are therefore
most likely not statistically significant.
Gender and Mortality During Fiscal Year 2002 a
little over half (52) of the 178 individuals who
passed away were men. However, DMR serves more
men than women. The No. Deaths per 1000 people
served shows that women tend to have a higher
death rate. It is important to note, however,
that the average age of women served by DMR is
greater than the age of men, with almost two
times as many females over the age of 85-yrs than
males. Thus, a higher death rate for women would
be expected since they are, as a group, older
than the men served by the department.
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Health Mortality Review ANNUAL REPORT September
2002
Age and Mortality
The relationship between age and mortality shows
the expected trend, with the mortality rate
increasing as people served by DMR get older. As
seen here, at around 70 -yrs of age there is a
dramatic rise in mortality, again, in line with
expectations and the trends observed in the
general population.
Individuals living at home (especially those
living with their family) are younger than the
other persons served by DMR. They also have a
much younger average age at death. The oldest
group served by DMR are living in LTC facilities.
They have the highest average age at death.
As can be seen in this graph there is a
relatively strong relationship between the
average age of the population living in each type
of residential setting and their average age at
death. The largest difference between the two
variables exists in CLAs, where the average age
of death is 13-yrs higher than the average age of
the population living in this type of setting.
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Health Mortality Review ANNUAL REPORT September
2002
Level of Disability and Mortality
In addition to age and gender, the level of
mental retardation is another factor that affects
a persons life expectancy. Persons with more
severe levels of disability typically have many
co-morbid conditions (other medical diagnoses
such as epilepsy, cerebral palsy, etc.),
including mobility and eating impairments. These
disabilities have a significant effect on
morbidity (illness) and mortality. As can be seen
in this graph, the relationship between level of
mental retardation and mortality shows the
expected trend. Persons with the most
significant levels of mental retardation (severe
and profound) have a much higher rate of
mortality.
No MR or ND category Includes children receiving
DMR services through the Birth-to-Three system
who are too young to test for mental retardation
and adults for whom the DMR has limited
responsibility under the Federal Nursing Home
Reform Act (OBRA 87) who do not have mental
retardation. It may include some DMR clients who
were DMR clients prior to Connecticuts current
statutory definition of mental retardation.
During FY 2002 (July 1, 2001 to June 30, 2002)
123 cases were formally reviewed by DMR
Mortality Review Committees. The information
presented in the next section summarizes ONLY
those deaths that were reviewed and will
therefore be different from the numbers discussed
in the preceding section. Information regarding
FY02 reviews will be presented for ALL CASES
REVIEWED and for only those deaths that OCCURRED
DURING FY02.
DMR Mortality Review DMR policy establishes
formal mechanisms for the careful review of
consumer deaths by local regional Mortality
Review Committees and a central Medical Quality
Assurance Board. This latter entity, modified by
the Governors Executive Order No. 25, is now
called the Independent Mortality Review Board
(IMRB) and includes representation from a number
of outside agencies as well as a consultant
physician. During FY02 a total of 123 cases were
reviewed by these local committees and the
central IMRB. Of these, 58 cases were referred
by local committees to the IMRB, and an
additional 14 (11) cases of the 65 closed at the
local level were reviewed centrally as a quality
assurance audit. Of the 123 cases that were
reviewed, 41 represented deaths that occurred
during FY02. Information regarding these deaths
is summarized separately below. IMPORTANT
FINDINGS From Mortality Reviews
Community Hospice Support is routinely provided
for persons served by DMR in all types of
residential settings, including regional centers
and STS, CLAs, CTHs, and for individuals
receiving supported living services when death is
anticipated, usually due to a terminal
illness. ALL CASES REVIEWED Hospice support
was provided in 24 of the 123 cases reviewed
(20) FY02 DEATHS ONLY Hospice support was
provided for 14 of the 41 individuals who died
(34)
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Health Mortality Review ANNUAL REPORT September
2002
Autopsies are performed by the Office of the
Chief Medical Examiner for those cases in which
the OCME accepts jurisdiction or by private
hospitals when DMR requests and the family
consents to the autopsy. ALL CASES REVIEWED
Of the 123 individuals reviewed, autopsies had
been requested for 48 (or 39 of the sample),
and consent was obtained and autopsies performed
for 26 (21 of the sample). The OCME accepted
jurisdiction and performed autopsies for 15 of
these cases, and private autopsies were
conducted for 11. FY02 DEATHS ONLY Of the 41
deaths that occurred during FY02, autopsies were
requested for 22 (54). A total of 8 autopsies
were performed (20), 5 of which were conducted
by the OCME. Special Note A recent report by
the Columbus Organization found that the average
rate of autopsy for persons served by those state
MR/DD agencies they surveyed was 11.7. This
compares to the 20-21 rate noted above for cases
reviewed by mortality review committees in
Connecticut during FY02. Predictability. ALL
CASES REVIEWED In 64 of the cases reviewed
(n79), the death was anticipated and related to
the diagnosis. In another 24 of the cases
(n29) the death was not anticipated, but was
directly related to the existing diagnosis. In
12 (n15) the death was not anticipated and not
related to the diagnosis, as follows 1
heart anomaly 2 asphyxia (drowning) 3
cardiovascular disease 1 subdural hematoma 1
adverse drug reaction 1 stroke 2
pulmonary embolism (1 following surgery) 1
pneumonia 2 inhalation of food 1 cause
undetermined by OCME FY02 DEATHS ONLY Of
the 41 deaths reviewed that occurred in FY02, 56
(n23) were anticipated and related to the known
diagnosis, 32 (n13) were not anticipated but
were related to the existing diagnosis, and 12
(n5) were not anticipated and not related to the
diagnosis, as follows (also included above) 1
cardiovascular disease 1 stroke 1
adverse drug reaction 1 pulmonary embolism
following orthopedic surgery 1 cause
undetermined by OCME DNR. Do Not Resuscitate
(DNR) orders are sometimes utilized when
individuals reach the terminal phase of an
illness. DMR has an established policy that
includes specific criteria that must be met along
with a review process for all DNR orders issued
for persons served by the department. ALL
CASES REVIEWED Of the 123 cases reviewed, 71
people (or 58) had DNR orders, indicating that
their condition was terminal. Of these, 67 were
formally reviewed by DMR. For the remaining four
individuals, DMR was not notified as required by
policy, but in all cases the DNR was appropriate
and would have met established criteria. Of
these four, two occurred at a LTC facility, one
at an acute care hospital , and the fourth at a
Hospice facility. All facilities received
additional training regarding required
notification to DMR. FY02 DEATHS ONLY Of the
41 deaths that occurred in FY02, 15 had DNR
orders (37). All met DMR policy requirements
(met criteria, and both notification and review
took place as required). Risk. Mobility
impairments and need for special assistance
eating are two factors that place individuals at
significantly higher risk of death. The
mortality review process therefore looks
carefully at the presence of these two personal
characteristics. ALL CASES REVIEWED Of the 123
individuals reviewed, 54 or 44 were
non-ambulatory. 62, or 50, were not able to
eat independently. FY02 DEATHS ONLY Of the 41
FY02 deaths reviewed, 18 (44) had mobility
impairments (non- ambulatory) and 10 (24) were
not able to eat independently.
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Health Mortality Review ANNUAL REPORT September
2002
SUMMARY Deaths that Occurred and Were Reviewed
between 7/1/01 6/30/02
Context. ALL DEATHS REVIEWED The vast
majority over 90 - of all deaths reviewed were
classified as due to Natural Causes. Six
(6)deaths were associated with an Accident. Of
these, 2 were related to choking, 2 were related
to drowning, and 2 appear to be related to a
fall. One case was a Homicide and in one case
the context was not able to be determined by the
OCME. FY02 DEATHS ONLY 39 deaths or 95 - of
the 41 reviewed were related to natural causes.
1 death was accidental and 1 was not able to be
determined by the OCME. The accidental death was
related to a fall. Neglect. ALL DEATHS
REVIEWED There were a total of 18 allegations
of abuse or neglect that occurred within 6
months of death for the cases reviewed. Of
these, 2 were not substantiated, 8 are still
under investigation, and 8 were substantiated.
In 4 of these latter cases, the neglect appeared
to be related to the cause of death, as follows
2 - asphyxia resulting from drowning (private
CLAs) 1- anoxia, associated with nursing
failure to properly assess (LTC) 1 - anoxia
resulting from choking on food (private day
program) Enforcement action was taken in 3 of
the 4 cases and included 2 dismissals from
service by the provider with arrest by police
and 1 citation with monetary fine by DPH (1).
In the fourth case there were inconsistent
findings regarding the culpability of the
involved staff member. In all four instances
family members were notified of findings. FY02
DEATHS ONLY Of the 41 deaths that occurred in
FY02 there were a total of 8 that included an
allegation of abuse or neglect within 6-months
of death. Of these, 1 was not substantiated, 5
are still under investigation, and in two cases
the neglect was substantiated. In both of these
latter two cases it was not possible to
determine if the neglect was the direct cause of
the deaths. Both cases involved nursing
personnel where enforcement action included
appropriate reporting to the Department of Public
Health and Nursing Board.

• 34 of the people had Hospice support.
• 20 had an Autopsy.
• 56 of the deaths were Anticipated and
  related to the existing diagnosis. In 12 the
  death was not anticipated and not related to
  the existing diagnosis.
• 37 had a DNR order. All met DMR criteria.
• 44 of the people could Not Walk (i.e., were
  non-ambulatory).
• 24 could Not Eat without assistance.
• 95 of all the deaths reviewed were due to
  Natural causes.
• 1 death was classified as Accidental.
• 2 cases involved Neglect that was
  substantiated. In both cases it was not
  possible to determine if the neglect was
  related to the cause of death.

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Health Mortality Review ANNUAL REPORT September
2002
Location at Time of Death As can be seen in this
graph over 60 of the individuals reviewed by the
mortality review committee in FY02 passed away
outside of a DMR - operated or funded residential
setting. Most died in the hospital or long term
care facility. The table below shows both the
number of individuals who died by location as
well as the relative percentage by location.
Where People Died FY 2002 Mortality Reviews
LEADING CAUSES OF DEATH A review of data
from Connecticut and two other New England
states suggests that the leading causes of death
for people with mental retardation are somewhat
different than for the general population. Heart
disease is the no. 1 cause of death for all
groups. However, unlike the general population,
deaths due to respiratory conditions are the
second leading cause of death for individuals
served by DMR. This is expected due to the high
percentage of deaths for persons with severe and
profound mental retardation and the high
incidence of co-morbid conditions in that group,
including conditions such as cerebral palsy,
dysphagia, gastro-esophageal disorders, all of
which carry a heightened risk of aspiration
pneumonia. It should be noted that increasing
age is an important factor that increases risk
for aspiration pneumonia as documented in the
National Vital Statistics Report published by the
CDC.1 This report states that a major cause of
death concentrated among the elderly, is a
pneumonia resulting from aspirating materials
into the lungs. Diseases of the nervous
system are the third leading cause of death for
DMR consumers. These include Alzheimers
Disease which has a very high incidence in
people with Down Syndrome - and Seizure
Disorders, again a condition that has a much
higher incidence in people with mental
retardation. Interestingly, deaths due to
accidents are much lower for people with mental
retardation than for the general U.S. or
Connecticut population. Deaths due to injuries or
accidents are the 5th leading cause of death in
the general population , but are only the 8th
highest cause of death for people reviewed by
DMRs mortality review committees.
Leading Causes of Death
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Health Mortality Review ANNUAL REPORT September
2002
BENCHMARKS While there is a dearth of objective
information regarding mortality in persons with
mental retardation being served by state agencies
from across the country, this section will
provide comparative analysis when appropriate
benchmarks do become available.
Massachusetts DMR The Massachusetts Department of
Mental Retardation has recently enhanced and
expanded its mortality reporting requirements and
has issued an annual report. This 2000
Mortality Report was prepared by the University
of Massachusetts Medical School/Shriver, Center
for Developmental Disabilities Evaluation and
Research2. The report covers the calendar year
January 1 through December 31, 2000. Mortality
statistics pertaining to persons 18-years and
older served by DMR were analyzed according to a
number of variables not dissimilar from many of
those contained in the first part of this report.
Consequently, it is possible to use some of the
Massachusetts data for comparative purposes. It
should be noted that the Massachusetts DMR
system, although larger, is very similar to
Connecticuts (e.g., population served, type of
services and supports, organization). However,
there are differences in reporting requirements,
age limits, and and categorization of service
types. It is therefore important that readers
exercise caution when reviewing comparative
information.
Overall Death Rate A comparison of the overall
death rate for persons served by the Connecticut
DMR with similar rates for the general population
in the U.S. and the DMR population in
Massachusetts are presented in this graph. The
overall Connecticut DMR death rate of 12.1 deaths
per thousand people is higher than the rate of
8.7 deaths per thousand people in the general
population, as would be expected due to the many
health and functional complications associated
with disability and mental retardation. A
comparison of the Connecticut DMR with
Massachusetts DMR shows a slightly higher death
rate in Connecticut for the adult population
(people older than 18-yrs of age.) of 0.8 deaths
per thousand people served. This difference does
not appear to be significant and may be a
reflection of the aforementioned differences in
the populations being served.
Residential Analysis A comparison of average
death rates by where people live is presented
here. The general pattern for rates by type of
setting is quite similar across the two states,
with the exception of the Other category. This
is most likely a reflection of differences in the
populations included in this cluster.
Death rates in DMR would therefore appear to be
very consistent with an available benchmark as
reported in Massachusetts.
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Health Mortality Review ANNUAL REPORT September
2002
RESEARCH REPORTS OF INTEREST This section will
report on selected research, reviews, and other
information from Connecticut and around the
country that is related to mortality and health
care in mental retardation and developmental
disabilities systems.

• Connecticut DMR Independent Study on Mortality
• The Connecticut DMR retained the services of two
  outside consultants to conduct a comprehensive
  analysis of mortality and basic demographic
  trends from 1997 to 2002 within the population of
  individuals served by DMR. The study was
  designed to provide
• Descriptive Overview of People Served by DMR
• Predictive Mortality Analysis
• Cross-sectional Analysis of People Served
• Longitudinal Analysis (Changes over Time)
• Using sophisticated statistical procedures the
  study authors found that
• Changes in mortality rates over time are not
  significant
• As expected, mortality is highly related to
  client age
• Women served by DMR are older than men, and hence
  have a higher mortality rate
• Increased levels of disability are inter-related
  and correlated with higher risk of mortality
• The strongest predictors of mortality are age,
  mobility status, and amount of supervision
  provided
• The aging in place phenomenon is leading to
  increased risk of mortality since individuals
  served by DMR are becoming older and more
  disabled over time.
• Copies of the report3 and a graphical summary can
  be obtained by contacting

DMR Strategic Leadership Center 860-418-6163 or
steven.staugaitis_at_po.state.ct.us

• California Study of National Mortality Review
  Systems
• The Columbus Organization conducted a survey of
  national mortality review practices in MR/DD
  systems for the California DDS4. Survey findings
  indicate that
• The majority of states require reporting of
  deaths for persons served by state DD agencies at
  both the local and statewide level.
• In most instances the determination to perform an
  autopsy is based upon the unique circumstances of
  each case, with an average of 11.7 of all cases
  having an autopsy.
• About half of the states use a set of
  standardized criteria to review deaths.
• The majority of states have established databases
  to track mortality information.
• The Columbus report was published in May of 2002.
  Copies can be obtained by contacting Columbus at
  
• 800-229-5116.

References 1 Minino, M.P.H., Arialdi, M. and
Smith, Ed., S.B., CDC National Vital Statistics
Reports National Vital Statistics System,
Deaths Preliminary Data for 2000, Volume 49,
Number 12, October 9, 2001. 2 2000 Mortality
Report A Report on DMR Deaths January 1
December 31, 2000. Prepared for the
Massachusetts Department of Mental Retardation
by the Center for Developmental Disabilities
Evaluation and Research at the University of
Massachusetts Medical School/Shriver. March 4,
2002. 3 Gruman, C. Fenster, J. A Report to
the Department of Mental Retardation 1996
through 2002 Data Overview Completed April
2002. 4 The Columbus Organization. Mortality
Review Survey Survey of the States. Submitted
to the California Department of Developmental
Services. May, 2002.
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Health Mortality Review ANNUAL REPORT September
2002
ENHANCEMENTS Executive Order No. 25 A number
of important enhancements to the risk management
and mortality review systems in DMR are being
implemented in response to Governor Rowlands
Executive Order No. 25. All of these changes are
designed to improve communication with families,
assure that a rigorous and objective evaluation
and review of circumstances surrounding untimely
deaths takes place,and to make sure that the
review process is independent and free from the
potential for conflict of interest. Some of
these enhancements include
Stronger Role for Investigations Unit The
Connecticut DMR has a unique relationship with
the State Police that includes the assignment of
a senior Officer to oversee and manage the
Investigations Unit. Two trained clinical nurse
investigators have joined the units staff and
are conducting preliminary screening on all
deaths that occur in DMR operated or funded
settings to immediately assess the need for a
complete A/N investigation. In addition, a
Special Investigative Assistant has been
appointed to oversee and monitor investigations
conducted within the private sector. New
Independent Mortality Review Board The Medical
Quality Assurance Board has been transformed into
a new Independent Mortality Review Board that
increases outside representation. The
Chairperson was appointed by the Commissioner of
DMR, in consultation with the Director of the
Office of Protection and Advocacy (OPA). The
independent medical professional (physician)and
an independent representative from a private
sector agency were jointly appointed by the DMR
Commissioner and OPA Director. In addition, OPA
now has two members. The new IMRB began meeting
in March, 2002. Increased Communication with
OPA The department is notifying the Executive
Director of the Office of Protection and Advocacy
of all deaths that occur for persons served by
DMR. The Director may request an expedited
review by the IMRB, or, may direct that an
abuse/neglect investigation be initiated for any
case. Consistent Notification of Families New
policies and procedures have been implemented to
assure that families and guardians are
consistently notified of all deaths and the
results of investigations and mortality reviews.
Families are provided with an opportunity to meet
with DMR personnel to review all
findings. Posting of Licensing Inspection
Reports The department is now requiring visible
notice to consumers, families and guardians that
the results of DMR licensing inspections are
available for review. In addition, DMR is
posting summary reports of inspections on the DMR
website in order to make access to the
information much easier and more widely available
to the public. Results of licensing inspections
can be viewed at www.dmr.state.ct.us/license.htm.
The Next Health and Mortality Review UPDATE
Will be issued in March of 2003. For more
information or to contact DMR please visit us at
www.dmr.state.ct.us
Prepared by Steven Staugaitis, Director,
Strategic Leadership Center Marcia Noll,
Director, Health and Clinical Services
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Health and Mortality MID-YEAR REPORT Issued
MARCH 2003
This is the second of a series of semiannual
reports on trends and related information
pertaining to the health and quality of care
received by individuals with mental retardation
served by the Connecticut State Department of
Mental Retardation. Reports are scheduled for
March and September of each year. The September
Annual Report includes a more comprehensive
analysis of annual data, with a special emphasis
on mortality trends. The Mid-year March report
is intended to provide an update on activities
and any new initiatives related to mortality and
risk reduction.
For the Period July 1, 2001 to December 31,
2002
Overview of DMR
The Connecticut Department of Mental Retardation
(DMR) provides a broad range of services and
support to Connecticut citizens with mental
retardation and, through the Birth to Three
System, to infants and toddlers with
developmental delays and their families.. As of
December 31, 2002, DMR was providing supports to
a total of 19,670 individuals, including 14,728
active clients of the department and about
5,000 participants in Birth to Three.
Approximately half of those individuals who
receive support from DMR (not including Birth to
Three) live at home, most with their families.
The remaining half receive residential living
services and supports. The full array of
supports and services available to persons with
mental retardation are provided directly by DMR
(public services), through contracts with over
150 private provider agencies, or are managed by
the individual, often with the assistance of
their family using funds provided by DMR. The
careful evaluation of the health and safety of
individuals served by DMR is an ongoing and
important responsibility of the department. This
report represents an effort to share important
trends and selected initiatives associated with
reducing risk for mortality in the people
supported by DMR.
Mortality Trends
NO. DEATHS. During the first half of fiscal year
2003 (July 1st through December 31st of 2002) a
total of 66 people died who were served or
supported by the Department of Mental
Retardation. Pro-rating this number to a full
fiscal year results in a projection of 132 total
deaths for the year. As illustrated in Figure 2,
this suggests a potential for fewer deaths this
year than observed in the previous two fiscal
years.
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Health Mortality Review MID-YEAR REPORT March
2003
DEATH RATE. The average Death Rate is expressed
as the no. of deaths per 1000 people served. It
compares the number of deaths to the number of
persons served in each type of setting. Figure 3
compares this rate from FY01 through the first
half of FY03. As can be seen, the average rate
may be decreasing. However, before finalizing
any conclusions it will be necessary to review
data from the full fiscal year since there is a
possibility seasonal variations in mortality may
be influencing findings.
RESIDENTIAL SERVICE. Table 1 below provides a
summary of the no.of deaths by where people lived
during the first half of FY03. Also included in
the table are the crude death rate and the rate
per 1000 people served. Figure 4 (next page)
displays some of this data in graphical form. In
general, lower rates are observed for persons
living in the less intensely supervised settings,
with the highest rates occurring for Campus
settings (Regional Centers and STS) and Long Term
Care. These latter two categories of residence
provide support to persons with the most complex
and significant needs, and thus represent
settings with an expected higher risk of
mortality.
Table 1
In this report we use the term average death
rate to reflect what is more commonly referred
to as the crude death rate in mortality and
epidemiological research. It is computed as
follows Total no. deaths/(population no.
deaths) X1000.
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Health Mortality Review MID-YEAR REPORT March
2003
Figure 4
Mortality Rate by Where People Live FY 2003
(Pro-rated)
Figure 5 illustrates similar data across three
time periods. Pro-rated for FY03, data show a
decrease in all settings except for Supported
Living. Caution should be exercised however, in
reviewing the projected increase in deaths in SL,
since there are still only a relatively small
number of deaths (i.e., from July to December
there were a total of 8 deaths, pro-rated to 16
for a full year). Nonetheless, the potential
presence of a trend toward increasing mortality
in Supported Living will require ongoing analysis
and review.
Figure 5
Comparison of Mortality Rate Trends by Where
People Live FY01 - FY02 - FY03 (pro-rated)
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Health Mortality Review MID-YEAR REPORT March
2003
DMR Mortality Reviews DMR policy establishes
formal mechanisms for the careful review of
consumer deaths by local Regional Mortality
Review Committees and a central Independent
Mortality Review Board (IMRB). The Regional
Committees reviewed a total of 74 cases during
the first half of FY03. Of these, 30 cases were
referred to the central IMRB. In addition to
these 30 cases, the IMRB reviewed 7 of the
remaining 44 cases that had been closed at the
regional level as part of its quality assurance
process. Thus, the central IMRB formally
reviewed a total of 37 cases across two meetings
during the first half of the fiscal year.
Membership on the central IMRB includes six
(6) Representatives from outside of DMR and
three (3) DMR representatives. In addition,
staffing and Technical assistance is provided to
the board by a Regional Health Services
Director, Case Management Supervisor, the
Medical Director at Southbury Training School,
the Special Protections Coordinator, and an
Administrative Assistant.

• Community Physician (1)
• OPA (2) 1 staff 1 parent
• Private Provider (1)
• Public Health (1)
• OCME (1)
• DMR (3)
• Dir Health/Clinical Services
• Dir Quality Assurance
• Dir Investigations

IMRB Membership
Current Status and Activities  Policies,
procedures and quality enhancement practices
initiated or enhanced during FY02 provide a
foundation of quality oversight, monitoring, and
improvement in the areas of mortality review and
health promotion. Implementation of procedures
such as the Sudden Death Protocol and regional
checklists ensure timely and appropriate
responses including notification of all
appropriate parties. Quality audits have shown
full compliance with policy. Regional mortality
reviews may sometimes, however, be delayed when
required documents are not immediately available
within policy time frames (e.g., hospital
reports, autopsy reports). Nurse Investigator
Reviews Activities by the two nurse investigator
positions within the Division of Investigations
has continued to improve the departments health
and mortality oversight. During the first half
of FY03, the nurse investigators (NIs) completed
an initial review of all deaths.
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Health Mortality Review MID-YEAR REPORT March
2003

• Full reviews were conducted for 30 cases, three
  (3) of which were referred for abuse/neglect
  investigations. Two of those have been referred
  to DPH and one investigation is being conducted
  by DMR. The Nurse Investigators screen all deaths
  and only those cases that meet selected criteria
  are identified as not requiring a full review.
  These criteria include factors such as the
  individual
• lived in his/her own or family home with minimal
  oversight by the department
• lived in a nursing home (case deferred to review
  by the mortality review system as appropriate)
• had a well documented terminal condition with no
  indication of quality of care issues.
•  
• Coordination with Office of Protection Advocacy
• Cooperation and communication between DMR and the
  Office of Protection and Advocacy (OPA) has been
  strengthened with the implementation of Memos of
  Understanding between the two departments. In
  accordance with these agreements, the DMR
  provides OPA with information on all deaths, the
  results of nurse investigator reviews, all IMRB
  records as requested, and any additional
  information relating to mortality review as may
  be needed. The DMR Director of Health and
  Clinical Services represents the Commissioner on
  the OPA Fatality Review Board (FRB) that was
  established by Executive Order 25. During the
  first half of the FY03, the Commissioner
  referred two cases for possible review by the
  FRB. One case involved a young man who died
  while incarcerated in a Department of Corrections
  facility while awaiting trial. The second case
  involved a man who died while in a nursing home
  for short-term admission, during which many care
  concerns and care coordination issues were
  identified in the DMR mortality review process.
  Both cases are currently under review by the FRB.
• Individual Safety Screening
• During the fall of FY03, the department
  implemented a procedure to screen individuals to
  determine the need for more formalized and
  comprehensive risk assessments. Three individual
  characteristics had been identified to be
  associated with increased risk for mortality
  through a comprehensive statistical study,
  mortality review committee findings, and root
  cause analysis (1) severe limitations in
  mobility, (2) severe seizure disorders, and (3)
  complications of swallowing and maladaptive
  eating behaviors.
• The department has issued a formal procedure
  mandating that case managers complete or assure
  the completion of a simple safety screening for
  all individuals receiving residential and/or
  adult day supports operated, licensed or funded
  by DMR. The screening is to be completed on an
  annual basis or at any time one of the risk
  factors is identified. Results from the
  screening are entered into the departments
  mainframe database for individual tracking and
  aggregate analysis. This process is designed to
  assure that persons, agencies and support teams
  who plan for and support individuals served by
  DMR take necessary steps to implement prevention
  strategies associated with

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Health Mortality Review MID-YEAR REPORT March
2003
identified risks in these three areas. The
screening is not considered a formal clinical
assessment, but rather is designed to trigger
such assessments for those persons identified as
having a potential for high risk.   The
Individual Safety Screening procedure represents
a relatively new initiative within the
department. Consequently, formal analysis of its
effectiveness has not yet been determined. A
review of data to date does however demonstrate
excellent progress toward assuring all
appropriate individuals receive the screening.
As of March, 2003, 88 of all required safety
screenings had been completed (n 5,374).
Results show that about 42 of the screenings
identified the presence of potential risk factors
that require a more comprehensive assessment.
Individuals living in campus settings (STS and
Regional Centers) and habilitative nurseries had
the highest percentage of identified risk.
Persons living in Supported Living had the lowest
percentage. These summary findings are
illustrated in Figures 6 and 7 below.
Figure 6
Figure 7
Data represents distribution of the 88 of
individuals noted above who have had an initial
safety screen completed.
DMR Database Changes Functional Profile
Screen In October 2002, the department
implemented a series of changes to the mainframe
database (CAMRIS) that revised data input
requirements regarding individual functional
abilities in areas such as eating, ambulation,
communication, activity of daily living, vision
and hearing. Changes in the database now enable
case managers to document individual support
needs for behavior, nursing and supervision. The
database also includes documentation re safety
screening results and completion of further
assessments, if needed. This information is to
be updated annually or more frequently as
necessary based on changes in individual
functional abilities.  It is anticipated that
full implementation of both the risk screening
and function profile data will assist the
department in ensuring appropriate supports for
individuals as well as providing essential
information for planning and implementing
system-wide risk prevention initiatives.
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Health Mortality Review MID-YEAR REPORT March
2003

• IMRB Future Initiatives
• The department has asked the IMRB to review
  issues associated with and provide
  recommendations on
• The development of criteria to help identify
  cases the Commissioner should consider referring
  to the OPA Fatality Review Board.
• Assisting DMR in developing criteria for broader
  implementation of the departments Root Cause
  Analysis procedure.
• Revisions to improve the Annual and Mid-year
  Health and Mortality Review Report, including
  both content and presentation of the often
  complex information contained in these report.
•  
•  

The next Health and Mortality Review will be a
full ANNUAL REPORT and is scheduled for
publication at the end of September, 2003. For
more information please visit DMR
at www.dmr.state.ct.us
Prepared by Steven Staugaitis, Director,
Strategic Leadership Center Marcia Noll,
Director, Health and Clinical Services
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20
Health and Mortality ANNUAL REPORT OCTOBER
2003
This is the second of a series of annual reports
on trends and related information pertaining to
the health and quality of care received by
individuals with mental retardation served by the
Connecticut State Department of Mental
Retardation. Reports are scheduled for
publication in the fall of each year and focus on
an analysis of annual data, with a special
emphasis on mortality trends and any significant
or new initiatives pertaining to the management
of consumer risk.
For the Period July 1, 2002 to June 30,
2003
Overview of DMR
Mental retardation is a developmental disability
that is present in about 1 of the Connecticut
population. In order for a person to be eligible
for DMR services they must have significant
deficits in intellectual functioning and in
adaptive behavior, both before the age of 18-yrs.
As of June 30, 2003, 14,667 individuals with
mental retardation were being supported by the
department. DMR is also the lead agency for the
Birth to Three System in Connecticut. This
system serves infants and toddlers with
developmental delays. Altogether, DMR assists
over 20,000 individuals and their families,
providing a broad array of services and supports.

Figure 1
Approximately 1/3 of the people served by DMR
receive a funded residential support. Over 560
are managing these supports themselves, often
with the assistance of their families. The
majority of residential supports (over 6,000
people), however, are more traditional in nature,
and include services provided in supported
living, community living arrangements (group
homes), community training homes and campus
programs operated at regional centers and
Southbury Training School. About 780 people are
supported by other state or local government
entities, including residential service in LTC
facilities, DMHAS, and residential schools.
Over 7,000 individuals live at home,
either independently or with their families.
About 6,000 infants and toddlers receive early
intervention support through DMRs Birth to Three
System.
as of June 30, 2003
21
Health Mortality Review ANNUAL REPORT October
2003
SECTION I Mortality Trends
An important component of the risk management
systems present within DMR involves the analysis
and review of deaths to identify important
patterns and trends that may help increase
knowledge about risk factors and provide
information to guide system enhancements.
Consequently, DMR continues to collect
information pertaining to the death of all
individuals who are active clients of the
department (n 14,667). The following section
provides a general description of the results of
this analysis for Fiscal Year 2003 (July 2002
through June 2003).
Figure 2 Type of Residential Support At Time of
Death
Mortality and Residence During the 12 month time
period between July 1, 2001 and June 30, 2002 a
total of 160 out of the 14,667 individuals
served by DMR passed away. As can be seen in
Figure 2 (to the right) approximately half died
while being served in a residential setting
operated, funded or licensed by DMR (blue section
of the pie). The other half were living at home
(family home or independently), in a long-term
care facility (e.g., nursing home), or other
non-DMR operated or funded setting . This
general pattern is consistent with that observed
last fiscal year, although there was a slight
reduction in the relative percentage of deaths
that occurred in CLAs, Community Training Homes
and Long-Term Care facilities. The percentage of
deaths that occurred in Supported Living
experienced a slight increase. The average Death
Rate1 is expressed as the number of deaths per
1000 people served. It compares the number of
deaths to the number of persons served in each
type of setting (no. deaths /population X1000),
and continues to show a predictable pattern In
general, the higher need for specialized care,
the higher the average rate of death.
LTC Long Term Care,, RC regional center, STS
Southbury Training School, CLA community
living arrangement (group home), CTH community
training home, SL supported living, Home live
independently or with family.
Figure 3 (graph on the left) shows the number of
people who died for every 1000 people served in
each type of residential setting. In a very
general sense, the settings to the left tend to
provide less comprehensive care and support than
the settings to the right, often a reflection of
the level of specialized care needed by the
people who live in each type of setting. For
example, persons living in Long Term Care (LTC)
(nursing homes) tend to be older than other
people served by DMR. They, along with those in
regional centers and at Southbury Training School
tend to have more significant disabilities and
health care needs - all three of these settings
have 24-hr nursing staff available. The death
rate (100.80) for persons served by DMR who live
in LTC is however, substantially lower than the
rate for all persons served in LTC (289.9), per
data obtained from the Connecticut Office of
Policy and Management.
Figure 3
1 In this report we use the term average death
rate to reflect what is more commonly referred
to as the crude death rate in mortality and
epidemiological research. It is computed by
dividing the no. of deaths by the EOY population
no. deaths and multiplying by 1000 to generate
a rate (no. per thousand).
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Health Mortality Review ANNUAL REPORT October
2003
Figure 5
Figure 4
Figures 4 and 5 (two graphs to the right) compare
the number of deaths within the population served
by DMR and the average death rate for the most
recent three (3) fiscal years. As can be seen,
FY03 experienced a decrease in both measures,
continuing the trend observed last year.
Figure 6 (graph to the left) compares the death
rate (the number deaths per 1000 persons served)
for the past three (3) fiscal years by type of
residential setting. Small differences can be
seen, with the rate decreasing in FY03 for most
settings, particularly in community training
homes, campus settings (regional centers and
STS), and in community living arrangements. On
the other hand, the opposite trend was observed
for persons receiving supported living services,
where the death rate increased to a level
slightly higher than that in FY01, reversing the
decline noted in FY02. Caution must be
exercised in reviewing this data since the actual
number of deaths in each of these settings was
relatively small. The differences across these
time periods are therefore most likely not
statistically significant.
Figure 6
Gender and Mortality As can be seen in Table 1
and Figure 7 below, during Fiscal Year 2003 men
experienced a higher death rate than women,
representing 60 of all deaths. This is
opposite the gender relationship observed in
FY02, and is surprising given the fact that
almost 2X as many women as men served by DMR are
over the age of 85-yrs, and therefore at
substantially higher risk of mortality.
Figure 7
Table 1 FY03 Mortality Rate by Gender
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Health Mortality Review ANNUAL REPORT October
2003
Figure 8
Age and Mortality
The relationship between age and mortality shows
the expected trend, with the mortality rate
increasing as people served by DMR get older. As
seen in Figure 8 (to the right) at around 70-yrs
of age there is a dramatic rise in mortality,
again, in line with expectations and the trends
observed in the general population.
After age 70-yrs, the death rate increases
dramatically in line with overall population
trends.
Figure 9
Figure 9 (to the left) compares the age trends
for FY03 (line) with those observed in FY02
(bar). As can be seen, the death rate decreased
for all age groups except young adults, where a
slight increase is seen. It should be noted that
individuals living at home (especially those
living with their family) are generally younger
than the other persons served by DMR. The oldest
group served by DMR are living in LTC facilities.
As expected, they experience the highest death
rate.
Figure 10
As can be seen in Figure 10 (to the right) there
is a relatively strong relationship between the
average age of the population living in each type
of residential setting and their average age at
death. The largest difference between the two
variables exists in community training homes
(14) and both CLAs and STS (11) where the
average age of death is more than 10-yrs higher
than the average age of the population living in
those settings. The difference between overall
average age and the average age at death is the
smallest for persons in supported living (3),
consistent with findings last fiscal year.
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Health Mortality Review ANNUAL REPORT October
2003
Level of Disability and Mortality
In addition to age and gender, level of mental
retardation is another factor that affects life
expectancy. Persons with more severe levels of
disability typically have many co-morbid
conditions (other medical diagnoses such as
epilepsy, cerebral palsy, etc.), including
mobility and eating impairments two important
risk factors. These factors tend to have a
significant effect on morbidity (illness) and
mortality (risk of death). As can be seen in
Figure 11 (to the right), the relationship
between level of mental retardation and mortality
shows the same trend as observed in FY02.
Persons with the most significant levels of
mental retardation (severe and profound) have a
much higher rate of mortality. This trend is in
line with expectations.
Figure 11
No MR (not mentally retarded) or ND (not
determined) category Includes children receiving
DMR services through the Birth-to-Three system
who are too young to test for mental retardation
and adults for whom the DMR has limited
responsibility under the Federal Nursing Home
Reform Act (OBRA 87) who do not have mental
retardation. It may include some DMR clients who
were DMR clients prior to Connecticuts current
statutory definition of mental retardation.
SECTION II DMR Mortality Review
IMPORTANT NOTE During FY 2003 (July 1, 2002 to
June 30, 2003) 135 cases were formally reviewed
by DMR Mortality Review Committees. The
information presented in the next section
summarizes ONLY those deaths that were reviewed
and will therefore be different from the numbers
discussed in the preceding section.
DMR policy establishes formal mechanisms for the
careful review of consumer deaths by local
regional Mortality Review Committees and a
central Independent Mortality Review Board the
IMRB. This latter entity, includes
representation from a number of outside agencies
as well as a consultant physician. During FY03 a
total of 135 cases were reviewed by the central
IMRB and/or these local committees. A total of
53 cases were referred by local committees to the
IMRB, and an additional 13 cases of the 82 closed
at the local level were reviewed centrally by the
IMRB as a quality assurance audit. IMPORTANT
FINDINGS From Mortality Reviews
Community Hospice Support is routinely provided
for persons served by DMR in all types of
residential settings, including regional centers
(RC), Southbury Training School (STS), community
living arrangements (CLA) , community training
homes (CTH), and for individuals receiving
supported living services when death is
anticipated, usually due to a terminal
illness. During this review period, hospice
support was provided in 48 of the 135 cases
reviewed (36), an increase over the 20 rate
noted last year.
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Health Mortality Review ANNUAL REPORT October
2003
Autopsies are performed by the Office of the
Chief Medical Examiner for those cases in which
the OCME accepts jurisdiction or by private
hospitals when DMR requests and the family
consents to the autopsy. Of the 135 individuals
reviewed, autopsies had been requested for 39 (or
29 of the sample). Consent was obtained and
autopsies performed for 28, or 21 of the 135
cases reviewed. The OCME accepted jurisdiction
and performed autopsies for 12 of these cases (9
of the 135), and private autopsies were conducted
for 16 individuals (12 of the cases reviewed).
The autopsy rate for Connecticut DMR 21 -
significantly exceeds the average rate of 11.7
reported last year by the Columbus Organization
following a survey of selected MR/DD state
agencies across the country. It is also
consistent with the DMR rate observed in
FY02. Predictability. In 71 of the cases
reviewed (n96), the death was anticipated and
related to previously diagnosed conditions. In
another 23 of the cases (n31) the individuals
death was not anticipated, but was directly
related to the existing diagnosis. In 6 (n8)
the death was not anticipated and not related to
previously known or existing diseases or
conditions. Causes for these latter eight (8)
cases were as follows 1 Heart Attack
(miocardial infarction MI) 1 Coronary
Artery Disease (CAD) 1 Pulmonary Embolism
1 Respiratory Failure (complication of
colonoscopy) 1 Septicemia 1 Blunt Trauma
(hit by car) 2 Cause Undetermined by
Autopsy DNR. Do Not Resuscitate (DNR)
orders are sometimes utilized when individuals
are terminally ill (e.g., end stage cancer) or
are in the final stages of an irreversible or
incurable condition such as Alzheimers Disease.
DMR has an established policy that includes
specific criteria that must be met along with a
special review process for all DNR orders issued
for persons who are placed and treated under the
direction of the Commissioner. Of the 135 cases
reviewed in FY03, 85 people (or 63) had DNR
orders. Of these, 94 (80) were formally reviewed
by DMR and met the established criteria. In the
remaining five cases (6), the individuals lived
in a Long-term Care facility and DMR was not
notified prior to the implementation of the
orders. All facilities that did not comply with
DMR policy received additional training regarding
requirements for notification and review by
DMR. Risk. Mobility impairments and need for
special assistance when eating are two factors
that place individuals at significantly higher
risk of morbidity and mortality. The mortality
review process therefore looks carefully at the
presence of these two functional abilities. Of
the 135 individuals reviewed, 65 or 48 were
non-ambulatory. Sixty-three (63), or 47, were
not able to eat independently. Further
analysis indicates that 70 individuals (52) had
one of these risk factors and 60 (44) had both
present. Thus, the majority of individuals who
died and were reviewed by mortality review
committees had one or more of the identified risk
factors present at the time of death.
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Health Mortality Review ANNUAL REPORT October
2003
Context Manner of Death. According to
Connecticut State law, the Office of the Chief
Medical Examiner (OCME) determines the cause of
death and the manner of death natural,
accident, suicide, homicide or undetermined.
For those deaths in which the OCME does not
assume jurisdiction, pronouncement is made by a
private physician using a different form. In all
such cases the manner of death must be classified
as natural, as any other manner of death must be
determined by the OCME according to state
statute. Of the 135 cases reviewed during FY03,
133, or 98 were classified as due to Natural
Causes. One individual died as the result of a
car accident (hit by car while crossing street).
In two cases the OCME was unable to determine
both the cause and manner of death. Ne
glect. There were a total of 14 allegations of
abuse or neglect that occurred within 6 months of
death for the cases reviewed. Of these, 7 were
not substantiated and 3 are still under
investigation. In 4 cases neglect was
substantiated. Circumstances regarding these
latter 4 cases were as follows 2 cases involved
the care provided in LTC facilities. 1 case
involved a delay by a day program in sending a
person home when ill. 1 case involved
inaccurate information provided to an acute care
facility. In the latter two cases the neglect was
not associated with the individuals death.
Corrective actions were taken. In the former two
cases (LTC) the Department of Public Health (DPH)
was notified and conducted reviews that resulted
in citations and fines for the two facilities.
The 3 cases still under investigation
following referral to DPH - involve concerns
about care provided in two (2) LTC facilities and
one (1) acute care facility. It is important to
note that in no instance was the substantiated
neglect the direct cause of death.
SUMMARY OF FINDINGS for deaths that were reviewed
in FY03

• 36 of the people had Hospice support.
• 21 had an Autopsy.
• 6 of the deaths were Not Anticipated and
  not related to the existing diagnosis.
• 63 had a DNR order. All but 5 met DMR
  cr