Medicaid Home and Community-Based Waivers: CMS Should Encourage  
States to Conduct Mortality Reviews for Individuals with	 
Developmental Disabilities (23-MAY-08, GAO-08-529).		 
                                                                 
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.				 
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-08-529 					        
    ACCNO:   A82185						        
  TITLE:     Medicaid Home and Community-Based Waivers: CMS Should    
Encourage States to Conduct Mortality Reviews for Individuals	 
with Developmental Disabilities 				 
     DATE:   05/23/2008 
  SUBJECT:   Accountability					 
	     Community health services				 
	     Data collection					 
	     Data integrity					 
	     Developmental disabilities 			 
	     Health and behavioral care standards		 
	     Health care services				 
	     Home health care services				 
	     Investigations by federal agencies 		 
	     Medicaid						 
	     Mortality						 
	     Persons with disabilities				 
	     Quality of care					 
	     Reporting requirements				 
	     Risk assessment					 
	     Risk management					 
	     State-administered programs			 
	     Strategic planning 				 
	     Waivers						 
	     Wrongful death					 
	     Government agency oversight			 
	     Quality of health care				 
	     Standards (health care)				 
	     Transparency					 

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GAO-08-529
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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 
incidentsï¿½events 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 CMSï¿½s 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 
componentsï¿½state-level interdisciplinary mortality review committees, 
involvement of external stakeholders, statewide actions to address 
problems, and public reportingï¿½gave 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 
[email protected]. 

[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 
womanï¿½s 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 deceasedï¿½s 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 [email protected]. 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 [email protected]: 

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. ï¿½ 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. ï¿½ 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, ï¿½6086(b), 120 Stat. 4, 127 (2006). 

[21] Pub. L. No. 94-103, 89 Stat. 486 (codified, as amended, at 42 
U.S.C. ï¿½ 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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