This resource was developed by AHRQ as part of its Public Health Emergency Preparedness program, which was discontinued on June 30, 2011. Many of AHRQ's PHEP materials and activities will be supported by other Federal agencies. Notice of transfer to another agency will be posted on this site.
This information is for reference purposes only. It was current when produced and may now be outdated. Archive material is no longer maintained, and some links may not work. Persons with disabilities having difficulty accessing this information should contact us at: https://info.ahrq.gov. Let us know the nature of the problem, the Web address of what you want, and your contact information.
Please go to www.ahrq.gov for current information.
This group includes those individuals who have mental illness,
cognitive impairment, or developmental delays and live independently in the
community with the support of a treatment or day/mental health program or
(nearly) full-time caretaker.
NHIS—D includes data about people who receive services
from adult day care or day activity centers. Services include meals,
counseling, nursing, monitoring of medications, and personal care. There are
also items about outpatient mental health services, the number of months that
outpatient mental health services were received, the number of visits that were
made on an emergency basis, and any support provided by a community mental
The American Community Survey includes information on
individuals in households who have difficulty learning, remembering, or
concentrating. When combined with the receipt of SSI, this information may be
an indication of the severity of the condition.
MassCHIP does not capture information on services utilized,
but does collect information about the number of days of poor mental health in
the past 30 days and the number of days of sad, blue, or depressed mood in the
past 30 days. These items are probably too broad to be good indicators of
severe mental illness.
Medicaid claims may contain information about programs in
the community that support individuals who have psychosocial needs, if such
services are covered by a given State's Medicaid program.
Table 15 shows data availability for psychosocial needs.
Return to Contents
Children who have significant functional deficits or
complex medical care and/or psychosocial needs present a slightly different
situation during an MCE. These children would most certainly be under the care
and supervision of a parent or adult at all times; thus, they are not as vulnerable
to lack of a caregiver. However, those children who depend on equipment or medical
supplies and electricity would be subject to some of the same issues as their
adult counterparts. Investigators sought databases or surveys that would show
the number of children who depend on medical equipment or supplies.
The National Survey of Children's Health (2007) provides
information on children who need/use more medical care or mental health or
educational services, or are limited in activities compared with other children
of the same age. It identifies the underlying condition in general terms (e.g.,
bone, joint or muscle problems or brain injury or concussion), but does not
indicate the types of equipment/supplies the child may need.
The National Survey of Children with Special Health Care
Needs (2005-2006) provides information on the demographic characteristics of
children who have special health care needs and the types of health and support
services needed. The survey is conducted through telephone interviews in all 50
States and the District of Columbia. Telephone numbers are dialed at random to
identify households with children and then the households are screened for
children who have special health care needs (at least 3,000 households per State
are screened). Data are available through an online Data Resource Center. Information on the child's condition and need for DME (e.g., wheelchair, hospital bed,
oxygen tank, and pressure machine), medical supplies, mobility aids, and
substance abuse treatment or counseling is supplied. Information on the type of
medical equipment is not specific to those children who depend on medical
technology, but includes children who used any of the listed medical
equipment/supplies at any point in the past 12 months.
In 1987 and 1990, a statewide census of children who
depend on medical technology was conducted in Massachusetts to determine the
size, pattern of distribution, and trends in the population of children who are
assisted by medical technology (Palfrey et al., 1991 and 1994). An unduplicated
count of children ages 3 months to 18 years who used one or more of the
following devices was obtained from medical and educational sources: tracheostomy,
respirator, oxygen, suctioning, gastrostomy, jejunal or nasogastric feedings, colostomies,
urethral catheterization, ureteral diversion, intravenous access, or dialysis.
Using the 1990 U.S. Census figures, the researchers were able to estimate the
prevalence rate of technological dependency for children in this age range and
apply this rate to the entire U.S. child population.
Return to Contents
The information from this report is summarized in the
table below. For each of the at-risk population groups, the data sources were
reviewed to determine which contain the needed information, are most current,
and are most readily available. Table 16 shows the various data sources
and the groups in the at-risk population that they adequately cover.
In some cases, more than one data source is highlighted.
In these cases, there would likely be a problem with "double counting" if
multiple data sources were used to create community-level estimates. For
example, Medicare claims and OASIS have a considerable degree of overlap; we
could not simply add the results obtained from these two data sources. For some
data sets the degree of overlap can be estimated, but this is not always the
case. For example, it may be difficult to estimate the overlap between NHIS
data and OASIS data.
Return to Contents
After reviewing all the data sources, investigators were
able to locate one or more for each of the at-risk population groups of
concern. However, there does not appear to be one ideal data source for the
information the investigators were seeking, and some of the better data sources
omit children. Neither the public use files nor those that require a DUA with
CMS (as well as analytic file construction and/or payment of a fee) could
provide information on the at-risk population across all provider and patient
The public use files (i.e., MassCHIP, SAMHDA, United
States Renal Data System, American Community Survey), although sufficient for
certain narrow categories (e.g., dialysis, methadone use, HIV/AIDS patients),
do not contain a broad enough picture of the other subgroups. OASIS provides
comparable information on many of the at-risk categories of interest, but the
population is limited to only those patients who currently receive home care-an
incidence rather than prevalence measure. The National Home and Hospice Care
Survey focuses on the services that home health agencies and hospice agencies
provide and could not be used as a reliable source for information on the
population of patients receiving home care services.
Medicaid and Medicare claims cover a large population and
are not limited to those who receive home care services. They are, however,
limited to low-income individuals or the elderly/disabled populations, and do
not contain information about most children, or about those whose care is paid
for by private insurance, self-pay, or is uncompensated.
To understand the size of the populations of concern, and
how estimates could be assembled from the data sources described above,
estimates of the at-risk population for one sample city, Worcester, Massachusetts,
is constructed in Table 17.
Return to Contents
Proceed to Next Section