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Abstract
Emergency room (ER) and hospital utilization among people with intellectual and developmental
disabilities (IDD) are significant contributors to rising healthcare costs. This study identifies
predictors of utilization among 597 adults with IDD. Using a retrospective survey of medical charts,
descriptive statistics and logistic regressions were conducted. Individual-level risk factors for ER
utilization included age, number of chronic health conditions, a diagnosis of cerebral palsy or
neurological disorder, mental illness, and polypharmacy. Environmental predictors included
community-based supported living. Hospitalization predictors included age and number of chronic
illnesses. People residing in group homes were less likely to be admitted. This study found risk
factors unique to individuals with IDD that should be addressed with tailored interventions as states
transition to Medicaid managed care.
Key Words: intellectual and developmental disabilities; emergency room; hospitalization;
services utilization
People with developmental disabilities (DD) expe- relationship between DD and ID in the study
rience lifelong cognitive and/or physical delays, sample (i.e., 99.5% of study participants were
with typical onset prior to age 22 (National diagnosed with at least one developmental disabil-
Institutes of Health, 2010). While some develop- ity, with the majority (56%) having a co-occurring
mental disabilities involve physical issues (e.g., intellectual disability).
cerebral palsy), many people with developmental Given advances in technology and preventa-
disabilities experience concurrent intellectual dis- tive health care, people with intellectual and
ability. An intellectual disability (ID) is one type of developmental disabilities (IDD) are living longer
developmental disability, characterized by signifi- (Heller, Stafford, Davis, Sedlezky, & Gaylord,
cant limitations in cognitive functioning and 2010; Office of the Surgeon General, National
decreased adaptive behavior in social, conceptual, Institute of Child Health and Human Develop-
and practical daily life skills (American Associa- ment, Centers for Disease Control and Prevention,
tion on Intellectual and Developmental Disabilities & U.S. Department of Health and Human
[AAIDD], 2017). People with intellectual disability Services, 2002). In addition, over the last 40 years,
make up approximately 1% of the population people with IDD in the United States (U.S.) have
worldwide (McKenzie, Milton, Smith, & Ouel- transitioned from living in institutions to living and
lette-Kuntz, 2016). Due to the high percentage of working in more integrated community settings.
people diagnosed with both intellectual disability Deinstitutionalization was hastened by the 1999
and developmental disabilities, the broad term of Supreme Court ruling, Olmstead v. L.C., which
‘‘intellectual and developmental disabilities’’, or brought about rapid closures of congregate settings
IDD, is commonly used to describe the population (ADA.gov, n.d.). Between 1997 and 2009, 36.2%
of people who receive publicly funded services and of adults with disabilities moved from institutional
supports from local provider agencies (Braddock, settings to less restrictive, community settings like
Hemp, Tanis, Wu, & Haffer, 2017). For the group homes and supported apartments (Healthy
purposes of this study, participants are described People 2010, 2010). The need for community-
as people with IDD because of the strong based housing options among people with IDD has
rapidly increased and has compounded the demand also have co-occurring psychiatric disabilities
for community-based healthcare and long-term (Cooper, Smiley, Morrison, Williamson, & Allan,
services and supports (LTSS; Medicaid, 2013; 2007; Einfeld, Ellis, & Emerson, 2011; Emerson,
Office for People with Developmental Disabilities 2003; Morgan, Leonard, Bourke, Jablensky, 2008).
[OPWDD], 2013). Long-term services and supports for people
People with IDD are often excluded from U.S. with IDD are largely funded through the Medicaid
national health surveillance data and not always program. People with disabilities in the U.S. utilize
recognized as a disparate population (National more Medicaid dollars than any other population
Council on Disability, 2009). However, people served. Since 2006, Medicaid expenditures have
with IDD have more complex medical, mental increased 2-3% annually (Kaiser Family Founda-
health, and behavioral health needs than those in tion, 2015) and reached $420 billion of all national
the general population. These chronic health health expenditures in 2012 (Centers for Medicare
disparities require frequent medical care and and Medicaid Services (CMS), 2011). Although
monitoring (Havercamp, Scandlin, & Roth, people with disabilities comprised only 18% of
2004) and contribute to earlier mortality among Medicaid enrollees in 2010, they accounted for
people with IDD when compared to those without 44% of Medicaid’s total expenditures (Centers for
IDD (O’Leary, Cooper, & Hughes-McCormack, Medicare and Medicaid Services (CMS), 2010).
2018). A study by Straetmans, van Schrojenstein The state of New York utilizes more Medicaid
Lantman-de Valk, Schellevis, & Dinant, (2007) dollars than any other state in the nation (U.S.
compared people with intellectual disabilities to House of Representatives, 2013). A growing
matched controls without IDD and found that portion of this cost is due to avoidable emergency
those with IDD experienced a variety of health room visits and hospital admissions. One analysis of
problems to a greater degree than the controls. utilization among New York’s Medicaid population
These health disparities included higher prevalence found that 60% of ER visits and 16% of hospital
rates of epilepsy, skin diseases, diabetes, and upper admissions in 2011 were potentially avoidable.
respiratory infections. People with cerebral palsy These avoidable utilization costs totaled $1.2
(CP) are also more likely to experience gastroin- billion in expenditures (New York State Depart-
testinal issues, low bone density, fractures, decubiti, ment of Health, n.d.).
and chronic muscle tone abnormalities (Evenhuis, Research on hospital utilization among adults
Henderson, Beange, Lennox, & Chicoine, 2000). with IDD is limited and outdated. A recent
Similarly, people with Down syndrome are at systematic review by Dunn, Hughes-McCormack,
greater risk for chronic health conditions including and Cooper (2018) found an overall lack of
congenital heart defects, epilepsy, gastrointestinal research on hospital admissions for physical condi-
issues, and endocrine disorders. Early onset age- tions among people with IDD. From more than
related disorders such as dementia and visual and 29,000 articles retrieved, their research team found
hearing loss are also frequent among people with only three articles that met their inclusion criteria
Down syndrome (Evenhuis et al., 2000). and gathered data on hospital admission rates due
Some chronic conditions experienced by to general medical or physical conditions among
people with IDD can be attributed to modifiable adults with IDD. The vast majority of articles
health behaviors and environmental risk factors reviewed were not from the current decade and
(Haveman et al., 2010). Hsieh, Heller, Bershada- focused solely on psychiatric hospital admissions. A
sky, and Taub (2015) and Stancliffe et al. (2011) 2006-2008 U.S. Medical Expenditure Panel Survey
found that physical activity and obesity rates of community-based residents (n ¼ 53,586) found
differed by living arrangement; people with IDD that people with a variety of disabilities accounted
who lived in independent, community-based set- for 40% of annual visits to the emergency room
tings were more sedentary than those residing in (Rasch, Gulley & Chan, 2013). Walsh, Kastner,
institutional settings. High rates of obesity put and Criscione (1997) analyzed data for people with
people with IDD at greater risk for debility and and without IDD admitted to a New Jersey hospital
obesity-related diseases such as coronary artery between 1983 and 1991 and found that utilization
disease, hypertension, and diabetes (Evenhuis et al., remained constant for the general population;
2000; Haveman et al., 2010). Furthermore, studies however, admissions for children and adults with
have indicated that 30-40% of people with IDD IDD rose by 56% and inpatient length of stay
increased by 42%. As a result, associated healthcare exists on health services utilization in this popula-
expenditures for people with IDD grew by 206%, tion (World Health Organization [WHO], 2013).
twice the rate of growth for those in the general This study aimed to identify health trends and
population (Walsh et al., 1997). Another U.S. individual and environmental factors that predict-
study by Janicki et al. (2002) surveyed 1,371 people ed ER utilization and hospitalization for a sample of
with IDD residing in group homes in upstate New adults with IDD who resided in agency-supported
York and found that 30% had used the ER and 16% settings throughout New York City, a high
had been hospitalized during the prior year. Medicaid recipient-count and cost region (New
New York and many other states are currently York State Department of Health, 2014). Specif-
seeking transition of their IDD service systems to ically, the study examined: (a) the demographic
Medicaid managed care rather than remaining with characteristics of 597 people with IDD who resided
the traditional fee-for-service payment structure. in agency-supported settings throughout NYC; (b)
Although managed care has been widely used as a associations between sample characteristics (e.g.,
mechanism for controlling healthcare costs in age, mental health status, chronic disease, envi-
programs for the general public, it has not been ronmental factors) and ER and hospital utilization;
used extensively in systems serving people with and (c) individual and environmental factors that
IDD. This newer model of care utilizes needs-based predicted ER and hospital utilization (for both
funding, in which states determine a per member medical and psychiatric reasons).
per month (PMPM) capitated rate to cover an In an effort to understand the factors that lead
individual’s supports and services based on assessed people with IDD to utilize the ER/hospital and
risk levels (Engquist, Johnson, & Johnson, 2012). target those factors with interventions, this study
Some states have already demonstrated managed aimed to contribute critical knowledge to the field.
care cost savings through prevention and reduc- When predictors are known, they can better inform
tion of emergency room (ER) visits, hospital health models (for example, Accountable Care
admissions, and hospital lengths of stay (The Organizations (ACOs) and Medicaid managed care
Lewin Group, 2004). Yamaki, Wing, Mitchell, models) for people with IDD. When programs
Owen, and Heller (2017) analyzed the impact of provide interventions that target high-need, high-
Medicaid managed care on adults with IDD who cost subgroups of people with IDD, cost savings can
received managed care (n ¼ 1121) in the state of be achieved (The Lewin Group, 2004) and funds
Illinois and those who did not (n ¼ 1102). redirected to improving quality and access to a
Preliminary findings demonstrated a significant greater array of community-based LTSS options for
decrease in utilization of the emergency room for people with IDD.
those who received Medicaid managed care
benefits, including care coordination, when com- Methods
pared to those who did not.
The Centers for Disease Control and Preven- Participants
tion (CDC), National Center on Birth Defects and Participants were drawn from a group of 744 adults
Developmental Disabilities (NCBDDD) (2009), with IDD who received residential supports from a
and Healthy People 2010 have all acknowledged large nonprofit provider agency in New York City.
the lack of information on the health status, health The agency offers a wide range of supports and
needs, and health disparities for people with IDD. services to more than 20,000 people with IDD,
There is great need for more health-related learning disabilities, and physical disabilities across
research on the IDD population (CDC & the lifespan and throughout the greater New York
NCBDDD, 2009). This study addressed this gap region. Services are provided to a diverse popula-
by examining the health status and hospital tion of people with IDD from all five New York
utilization of adults with IDD. City boroughs, and three surrounding counties
(Long Island, Suffolk/Nassau counties, and West-
Specific Aims chester county). To meet criteria for this study,
participants had diagnosed intellectual and devel-
People with IDD are consistently excluded from opmental disabilities, were 21 years of age and
U.S. national health surveillance research (CDC & above, and resided in some form of agency-
NCBDDD, 2009). As a result, little information supported housing for the entire 2011 calendar
year. Based on these criteria, 597 residents were the medical chart (epilepsy was given as one
included and had their charts reviewed. example for nurses who completed the survey).
Thirty-eight agency nurses were trained to More than one developmental disability could be
complete a structured survey of each resident’s indicated on the survey, if individuals had multiple
medical chart. The 597 individuals surveyed diagnoses. A ‘chronic conditions’ variable was
resided in one of 94 supported living arrangements created as a total count of the number of chronic
including: (a) intermediate care facilities (ICFs)— health problems a person was being actively
congregate, institutional settings that house ap- monitored/treated for. Prevalence of cardiovascular
proximately 12-15 people with IDD who require disease and diabetes were identified as separate
24-hour daily staff assistance; (b) individualized independent variables, as they serve as Healthcare
residential alternatives (IRAs)—a group home Effectiveness Data and Information Set (HEDIS)
setting with 4-8 people with IDD receiving 24- measures, which are regularly monitored as perfor-
hour daily staff support; or (c) supported apart- mance outcomes in Medicaid managed care models
ments—a community-based setting of 1-4 adults (National Committee for Quality Assurance
with IDD who are typically more independent and [NCQA], 2017). Although no uniform definition
receive a lower level of staff support (up to 20 of polypharmacy exists, the most commonly
hours/week). reported definition in health sciences literature is
taking five or more medications daily (Masnoon,
Shakib, Kalisch-Ellet, & Caughey, 2017). For this
Procedures reason, polypharmacy was entered into the model
A structured survey was designed by the research as a dichotomous variable (0-4 medications vs. 5 or
department of the agency with input from program more medications).
administrators and the lead nurse. Four pages in Environmental characteristics were also col-
length, the survey contained 22 items and multiple lected and analyzed as independent variables
sub-items that covered individual and environmen- including: supported living arrangement and region.
tal characteristics. Many responses were multiple Due to the racial, ethnic, and socioeconomic
choice and/or frequency-based in nature. The diversity of New York’s geographic regions, six
following independent variables were collected regions were included as environmental variables of
using the survey and examined as potential interest. Although these regions are in close
predictors of ER utilization and hospitalization: proximity of each other, socioeconomic status and
age, sex, developmental disability (identified based on access to health care services varies a great deal
diagnostic information drawn from the Develop- between them, with the Bronx being the lowest
mental Disabilities Profile-2 (OPWDD, n.d.), a socioeconomic region, with a median household
New York State needs assessment completed by a income of 34,299 USD and 30.3% of its population
team of healthcare professionals including a living in poverty, and Long Island being the
physician, pediatrician, psychiatrist and/or psychol- wealthiest, with a median household income of
ogist), level of intellectual disability, chronic health 94,064 USD and only 6.95% of its population
problems (identified by physician and/or specialist living in poverty (U.S. Census Bureau, 2016;
evaluations and documentation on the active United Hospital Fund, 2008). Region was included
treatment/monitoring of 20 different diagnosed to serve as an indirect indicator of neighborhood
health conditions), mental health diagnoses (deter- deprivation and health services access. Cooper et
mined by psychiatrist or psychologist evaluations al. (2011) found that adults with IDD were more
and treatment notes for mental and/or behavioral likely to live in economically depressed regions.
health diagnoses), and polypharmacy (identified as They also found that socioeconomic status and
the total number of prescription medications for neighborhood deprivation were inversely related to
medical/physical issues and psychotropic medica- emergency room utilization. This study’s authors
tions taken by mouth daily or PRN [as needed]). were interested in looking for similar trends within
Five developmental disability types were provided an urban U.S. population with IDD.
on the survey—autism spectrum disorder, cerebral The study had four dependent variables: ER
palsy, Down syndrome, neurological disorder, and use for a medical/physical reason, hospitalization
other. Neurological disorder was identified based for a medical/physical reason, ER use for a
on a formal physician diagnosis contained within behavioral/psychiatric reason, and hospitalization
for a behavioral/psychiatric reason. Program nurses psychiatric reasons. These outcomes were respec-
collected survey information on the number of ER tively coded as: 0 for ‘‘No Hospital Admission’’ and
visits and hospital admissions for medical and 1 for ‘‘Hospital Admission’’; and 0 for ‘‘No ER
psychiatric reasons during the 2011 calendar year. utilization’’ and 1 for ‘‘ER utilization’’. In order to
Each ER and/or hospital admission was counted control for the effects of environmental factors
separately; for example, if an individual visited the when exploring individual characteristics, models
ER and then was admitted to the hospital, one ER were built hierarchically. Specifically, environmen-
visit and one hospital admission were counted. tal factors (including type of living arrangement
Emergency room visits were classified based on the and the region in which participants resided) were
primary symptoms documented in the medical entered in the first block, then individual charac-
chart and on follow-up sub-questions on the survey teristic (including age, sex, level of intellectual
(e.g., ‘‘The visit was medically necessary [e.g., disability, type of developmental disability, number
critical injury/illness required immediate atten- of chronic health conditions, mental health
tion].’’ versus ‘‘Consumer needed to be evaluated, diagnosis, and polypharmacy) were added in a
diagnosed, or stabilized’’). ER visits and hospital second block. The regions used in this study
admissions were defined as ‘‘being seen in an ER’’ systematically differ from one another in terms of
and ‘‘being hospitalized’’ respectively, but the wealth and demographic composition. To account
survey did not collect additional information on for variation due to clustering within region,
whom the person was seen by during these visits. regional indicators were entered as fixed-effects
Prior to administration, the survey was pilot (Allison, 2009). The Queens region was used as the
tested and minor revisions were made. In addition, reference group as it had the largest share of the
program nurses attended an in-person training sample and a median household income that was
session at their monthly nurse’s meeting and a closest to the middle. Regression coefficients (B)
follow-up training webinar on how to complete the for each of the predicting variables were tested for
survey. Program nurses reviewed hard copies of statistical significance, and the corresponding odds
residential medical records to complete the survey. ratios (OR [eB]) were used for interpreting effect
Upon completion of the survey, data were entered size. Odds ratio values of 1.44, 2.48, and 4.27
by two trained administrative assistants. A research correspond to Cohen’s d values of 0.2, 0.5, and 0.8
associate reviewed the data and contacted program respectively (Borenstein, Hedges, Higgins, &
nurses when information was missing or unclear. Rothstein, 2009). Within social sciences literature,
these have come to be conventionally interpreted
as representing small, medium, and large effects on
Data Analysis the suggestion of Cohen (1988). However, it
To explore the sample’s distributions on the should be noted that Cohen’s d is a treatment
variables in this study, descriptive statistics are effect size and may not be appropriate when
presented including frequencies and percentages for considering the prediction of odds from a contin-
categorical predictors, along with means, standard uous predictor. There were five missing responses to
deviations, skew, and kurtosis for continuous items on the survey. Listwise deletion was used
predictors. Bivariate correlations were explored to when running the models; hence, these cases were
examine the relationships amongst the variables not included in the analyses.
used in this study. To remediate potential collin-
earity problems, predicting variables exhibiting Results
high correlations (.500 or above) with other
variables were removed from the regression analy- Table 1 provides descriptive statistics of the
ses. One exception, however, was that profound individual and environmental characteristics of
intellectual disability correlated at 0.522 with the study’s sample. As seen in Table 1, more than
institutionalization, but both were retained as they half of the sample was male (58%), 41 years of age
conceptually represent separate individual and and above (52%), and had mild to moderate
environmental factors. intellectual disability (ID) (69%). Approximately
Binomial logistic regression models were used one-third of the sample (30%) was diagnosed with
to identify predictors of each ER utilization and two or more developmental disabilities. Thirty-five
hospitalization for either medical or behavioral/ percent (35%) had a neurological developmental
Table 1 Table 1
Sample Demographics (n ¼ 597) Continued
independent predictors of: (a) ER visits for medical utilization than those without a mental illness; and
reasons; (b) hospital admission for medical reasons; people who used five or more medications (poly-
(c) ER visits for behavioral/psychiatric reasons; and pharmacy; B ¼ .787, OR ¼ 2.20, p ¼ .01) had higher
(d) hospital admission for behavioral/psychiatric odds for ER utilization than those who took 0-4
reasons. Tables 3 and 4 highlight significant medications.
predictors of medical ER visits and hospital As age increased, the odds of visiting the ER
admissions (Table 3) and behavioral/psychiatric for a medical reason increased by 2% for each
ER visits and hospital admissions (Table 4). additional year (B ¼ .019, OR ¼ 1.02, p ¼ .02).
A number of individual and environmental- Those with cerebral palsy (B ¼ .810, OR ¼ 2.25, p ¼
level factors were found to be predictive of ER visits .01) had over twice the odds of visiting the ER,
for medical reasons. Both region of residence and while those with neurological disorders (B ¼ .440,
type of living arrangement had a significant impact OR ¼ 1.55, p ¼ .05) had over one and a half higher
on ER utilization for medical reasons. In the second odds of visiting the ER than those without a
poorest region, Brooklyn, residents appeared to developmental disability.
have half the odds of visiting the ER for a medical Chronic illness and polypharmacy were signif-
issue (B ¼ .672, OR ¼ .51, p ¼ .03). This may be icant predictors of ER visits for medical reasons,
due to the fact that residents here had a lower with a 13% increase in odds for each additional
average number of chronic conditions than those in chronic illness (B ¼ .121, OR ¼ 1.13, p ¼ .04) and
the middle-income region (Queens), which served those on 5 or more medications had over twice the
as the reference group. Once individual character- odds of visiting the ER for medical reasons (B ¼
istics were entered, this effect fell to trend .787, OR ¼ 2.20, p ¼ .01) than those who took 0 to
(B¼0.554, OR ¼ 0.557, p ¼ 0.100). Additionally, 4 medications. Having a mental illness was also
when individual characteristics were entered, the significantly associated with going to the ER for
poorest region, the Bronx, exhibited a trend medical issues, with people diagnosed with a
implying that residents in that region had nearly mental illness having 1.75 times higher odds (B ¼
twice the odds of visiting the ER for medical .562, OR ¼ 1.75, p ¼ .01) than those without a
reasons than their counterparts in a more middle- mental health diagnosis.
income region (Queens) (B ¼ 0.642, OR ¼ 1.901, p The results from the regression models exam-
¼ 0.076). Residing in a supported apartment was ining predictors of hospitalization for a medical
also associated with increased odds of ER visits for a reason are also detailed in Table 3. When
medical issue. When considering environmental considering environmental risk factors alone, living
factors alone, analysis shows that people residing in in an institutional setting was the only significant
supported living had about 2.6 times the odds for predictor of hospitalization for a medical reason (B
visiting an ER than those who resided in a group ¼ .497, OR ¼ 1.64, p ¼ .04). When individual-level
home (B ¼ .951, OR ¼ 2.59, p ¼ .03). Upon factors were added, the prediction fell to non-
entering individual-level characteristics, this effect significance. It appears that the characteristics of
increased to nearly three times the odds (B ¼ 1.046, individuals are explaining the association between
OR ¼ 2.85, p ¼ .03), implying a possible suppression institutional residence and medical hospitaliza-
effect resulting from an association between tions. Namely, as mentioned before, having pro-
residence type and individual-level characteristics. found intellectual disabilities has a strong, positive
The following individual-level characteristics relationship with institutionalization (r ¼ 0.522).
were found to be predictive of ER utilization: each Among individual-level predictors for medical
additional year of age (B ¼ .019, OR ¼ 1.02, p ¼ hospitalization, age and number of chronic condi-
.02) led to a higher odds of utilizing the ER; having tions were the only significant factors. The odds of
cerebral palsy (B ¼ .810, OR ¼ 2.25, p ¼ .01) or a medical hospitalization increased a factor of 4% for
neurological condition (B ¼ .440, OR ¼ 1.55, p ¼ each additional year in age (B ¼ .037, OR ¼ 1.04, p
.05) (relative to those having no diagnosed ¼ .001). For each additional chronic health issue,
developmental disability) had higher odds of ER the odds of medical hospitalization increased by
utilization; ER visit odds increased with each about 1.2 times (B ¼ .176, OR ¼ 1.19, p ¼ .02).
additional chronic condition (B ¼ .121, OR ¼ Details pertaining to ER visits and hospitaliza-
1.13, p ¼ .04); those with a mental illness (B ¼ .562, tion for behavioral/psychiatric reasons are present-
OR ¼ 1.75, p ¼ .01) had higher odds of ER ed in Table 4. There was an effect indicating that
Table 2
Bivariate Zero-Order Correlations Amongst Factors and Outcomes
1 2 3 4 5 6 7 8
1. Poverty Rate 1
2. Institutional Living 0.008 1
3. Supported Living 0.201 0.161 1
4.Age 0.060 0.047 .104 1
5. Sex 0.008 0.051 0.015 0.031 1
6. ASD 0.146 0.177 0.059 0.293 0.136 1
7. CP .143 .141 0.053 .032* 0.032 0.123 1
8. DS 0.043 0.091 0.071 0.045 0.050 0.150 0.101 1
9. Neuro 0.204 0.137 0.077 0.005 0.025 0.036 0.140 0.095
10. Other DD 0.191 0.133 0.146* 0.171 0.003 .0.309 0.169 0.221
11. Moderate ID 0.064 0.200 0.089 0.042 0.032 0.096 0.002 0.024
12. Severe ID 0.035 0.409 0.097 0.069 0.073 0.167 0.004 0.132
13. Profound ID 0.004 0.522 0.095 0.002 0.015 .028 0.135 0.050
14. Chronic Conditions 0.054 0.003 0.007 0.411 0.039 0.189 0.009 0.032
15. MH diagnosis 0.074 0.014 0.069 0.070 0.005 0.116 0.061 0.094
16. Poly-Pharmacy .023 .044 0.020 .294 .114 0.071 .022 .128
17. ER Behavioral 0.043 0.057 0.007 0.065 0.045 0.005 0.073 0.039
18. Hospital Behavioral 0.036 0.037 0.041 0.017 0.050 0.013 0.059 0.018
19. ER Medical .003 .072 0.033 0.166 0.098 .086 0.114 .089*
20. Hospital Medical 0.031 0.089 0.013 0.211 0.027 0.068 0.059 0.026
1 2 3 4 5 6 7 8
Note. MH ¼ mental health diagnosis; ASD ¼ Autism Spectrum Disorder; CP ¼ cerebral palsy; DS ¼ Down Syndrome; Neuro
¼ neurological disorder; DD ¼ developmental disability; ID ¼ intellectual disability.
*Denotes significance at 0.05.
individuals residing in a wealthier region (West- tal disabilities in the U.S. This study was one of the
chester) had approximately 75% times lower odds first to examine predictors of ER and hospital
of visiting the ER for behavioral/psychiatric reasons utilization for medical and behavioral/psychiatric
than individuals living in a more middle-income reasons. During the study period, 38% of the sample
region (Queens) (B ¼ 1.353, OR ¼ .26, p ¼ .04). visited the ER for a medical issue, which was eight
Once individual-level characteristics are entered, percentage points higher than the utilization rate
however, this effect falls to non-significance. (30%) reported in the Janicki et al. (2002) study of
Among individual level characteristics, those with adults with IDD residing in upstate New York group
mental illness diagnoses had nearly 19 times higher homes. This ER utilization rate was also higher
odds of visiting the ER for behavioral/psychiatric than the 2012 published rate for people in the
reasons (B ¼ 2.931, OR ¼ 18.75, p ¼ .004) than general U.S. population (20%) (Gindi, Cohen &
those without a mental health diagnosis. No other Kirzinger, 2012). Although additional research is
factors were significant predictors of ER visits for needed, this finding suggests that people with IDD
behavioral/psychiatric reasons. In this study, no residing in the NYC area may have a unique set of
significant predictors of hospitalization for behav- characteristics that place them at greater risk for
ioral/psychiatric reasons were found. ER utilization.
Further, 15% and 3% of this study’s sample
Discussion were admitted to the hospital for medical and
behavioral/psychiatric issues, respectively. Hospital
Limited health surveillance and utilization data admission for medical reasons was fairly consistent
exist for people with intellectual and developmen- with Janicki et al.’s (2002) sample (16%) but lower
Table 2
Extended
9 10 11 12 13 14 15 16 17 18 19 20
1
0.394 1
0.018 0.004 1
0.095 0.126 0.248 1
0.073 0.037 0.244 0.168 1
0.192 0.010 0.052 0.072 0.021 1
0.089 0.004 0.051 0.065 0.075 0.092 1
0.145 .023 .036* .003 0.017 .339 .254 1
0.033 0.036 0.037 0.008 0.042 0.001 0.177 0.056 1
0.047 0.025 0.005 0.017 0.016 0.013 0.120 0.037 0.633 1
.150 .014 0.067 0.035 .093 0.202 0.127 0.220 0.160 0.043 1
0.088 0.023 0.032 0.011 0.080 0.202 0.034 0.136 0.059 0.034 0.483 1
9 10 11 12 13 14 15 16 17 18 19 20
than the general public’s percentage (27%) (Gindi utilization rates have rarely been studied (Lin et
et al., 2012). Although speculative, this low rate of al., 2006). Therefore, the environmental predictors
admission may represent the level of preventative of living arrangement and geographic region were
care that residents receive by provider agencies of great interest in this study. When individual-
who often have nurses assigned to group homes. level factors were controlled for, the risk of medical
These nurses are charged with ensuring residents’ ER utilization intensified for supported apartment
medical needs are attended to. The low rate of residents, placing them at three times greater odds
behavioral/psychiatric admissions may be due to for visiting the ER than those residing in group
misclassification error or unique features of the homes. Lunsky, Balogh and Cairney (2012) found a
sample used in this study (e.g., a low incidence of similar, yet non-significant, trend in which people
hospitalization for behavioral/psychiatric reasons) with ID living in the community demonstrated a
and does not imply that this would be the case in a greater risk for visiting the ER (for psychiatric
larger population. reasons) than group home residents.
Individual-level predictors of ER/hospital uti- Increased risk for ER utilization among adults
lization were consistent between this sample, other with IDD who live in the community may be
samples of adults with IDD, the elderly U.S. attributed to service access issues, low utilization of
population (e.g., polypharmacy) and general U.S. primary care and/or preventative wellness appoint-
population (e.g., age, chronic illness) (Joynt, ments, lack of understanding of IDD-specific needs
Gawande, Orav, & Jha, 2013; Lin et al., 2006; among primary care physicians (PCP), less staff
Wong, Marr, Kwan, Meiyappan, & Adcock, 2014). support in encouraging healthy eating, physical
Individual-level health factors are often of focus in activity and regular health checks, and decreased or
utilization studies (Hosking et al., 2017; Thomas et unreliable access to transportation (Friedman &
al., 2011). However, the impact of socioeconomic Rizzolo, 2016; Hsieh et al., 2015; U.S. Public
and environmental predictors on ER/hospital Health Service, 2005), all of which merit further
136
Emergency Room Visits for Medical Reason Hospitalization for Medical Reason
(n ¼ 229) (n ¼ 91)
Step Two Step Two
Step One (Enabling) (Incl. Predisposing) Step One (Enabling) (Incl. Predisposing)
Exp (B) Exp (B) Exp (B) Exp (B)
2019, Vol. 57, No. 2, 127–145
Variables b [95% CI] Sign. b [95% CI] Sign. b [95% CI] Sign. b [95% CI] Sign.
Region
Bronx .186 1.20 [.64, 2.28] .642 1.90 [.94, 3.87] ^ .122 .89 [.37, 2.12] .161 1.18 [.45, 3.06]
Brooklyn .672 .51 [.28, .95] * .554 .58 [.30, 1.11] ^ .064 .94 [.44, 2.01] .013 1.01 [.46, 2.26]
Long Island .273 .76 [.44, 1.32] .094 .91 [.50, 1.67] .381 .68 [.32, 1.47] .183 .83 [.37, 1.88]
Manhattan .133 1.14 [.64, 2.03] .288 1.33 [.71, 2.50] .028 1.03 [.49, 2.16] .064 1.07 [.48, 2.38]
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
(Table 3 continued)
Table 3
Continued
Emergency Room Visits for Medical Reason Hospitalization for Medical Reason
2019, Vol. 57, No. 2, 127–145
(n ¼ 229) (n ¼ 91)
Step Two Step Two
Step One (Enabling) (Incl. Predisposing) Step One (Enabling) (Incl. Predisposing)
Exp (B) Exp (B) Exp (B) Exp (B)
Variables b [95% CI] Sign. b [95% CI] Sign. b [95% CI] Sign. b [95% CI] Sign.
Level of Intellectual
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Disability
137
Table 4
Predictors of ER Use and Hospitalization for a Behavioral/Psychiatric Reason
138
Emergency Room Visits for Behavioral/ Hospitalization for Behavioral/
Psychiatric Reason (n ¼ 44) Psychiatric Reason (n ¼ 18)
Step Two Step Two
Step One (Enabling) (Incl. Predisposing) Step One (Enabling) (Incl. Predisposing)
Exp (B) Exp (B) Exp (B) Exp (B)
2019, Vol. 57, No. 2, 127–145
Variables b [95% CI] Sign. b [95% CI] Sign. b [95% CI] Sign. b [95% CI] Sign.
Region
Bronx .359 1.43 [.55, 3.75] .284 1.33 [.45, 3.90] .702 .50 [.05, 4.55] 1.039 .35 [.04, 3.52]
Brooklyn .966 .38 [.11, 1.27] .906 .40 [.12, 1.40] .333 .72 [.13, 4.02] .363 .70 [.12, 4.15]
Long Island .218 .80 [.32, 2.00] .184 .83 [.31, 2.22] .295 1.34 [.35, 5.15] .517 1.68 [.40, 7.13]
Manhattan .154 .86 [.32, 2.33] .103 1.11 [.39, 3.19] .397 1.49 [.35, 6.28] .655 1.93 [.42, 8.90]
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
(Table 4 continued)
Table 4
Continued
2019, Vol. 57, No. 2, 127–145
139
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES ÓAAIDD
2019, Vol. 57, No. 2, 127–145 DOI: 10.1352/1934-9556-57.2.127
investigation. People who live more indepen- sessment, Respite and Treatment (START; Cen-
dently or with family typically lack necessary ter for START Services, 2019). U.S. provider
access to medical and/or mental health services agencies have also undertaken a variety of
and receive ‘‘light touch’’ supports (Lunsky, Tint, organizational level interventions including 24-
Robinson, & Khodaverdian, 2011; Weiss, 2009). hour nursing hotlines, telepsychiatry and tele-
Improved access to LTSS for those living in health systems that enable people with IDD and
supported apartments, independently, or with their staff to contact nurses/physicians after hours
family is imperative to improving health-related and receive support in deciphering between true
quality of life and decreasing hospital utilization emergencies and preventable or risk-aversive ER
in this population. visits. Although some of these initiatives are
Geographic region was also identified as a targeted towards the general public or other
predictor of ER utilization in this study. The patient populations, attention must be paid to
present study used geographic region as an indirect their applicability for people with IDD.
indicator of neighborhood deprivation and health Increased access to PCP and specialty provid-
services access. People who resided in the ers, and enhanced training for these professionals in
wealthier region of Westchester utilized the ER preventative care for people with IDD, have also
for psychiatric visits to a lesser degree than people
proven effective in reducing ER utilization and
in the middle-income region of Queens. Although
hospitalization. Interventions such as salary and
only marginally significant, living in the Bronx,
loan repayment incentives have proven effective in
the lowest socioeconomic region, was a potential
increasing access to PCPs and specialty outpatient
risk factor for both medical and behavioral/
providers in U.S. Health Professional Shortage
psychiatric ER visits. This is consistent with
Areas, like the Bronx (National Health Service
outcomes from other utilization studies of people
with disabilities (Cooper et al., 2011; Rasch, Corps, 2014). In Canada, the Health Care Access
Gulley, & Chan, 2013) and the broader New Research and Developmental Disabilities (H-
York City population (Robert Wood Johnson CARDD) Program has developed brief teaching
Foundation, 2013). Cooper et al.’s (2011) study videos involving actors with intellectual disabili-
of adults with IDD found that people with greater ties, a toolkit, and ‘‘About Me Passports’’ describ-
neighborhood deprivation and less access to ‘goods ing each person’s needs in order to improve PCP
and services, resources and amenities, and of a and emergency room staff understanding of people
physical environment which are customary in with IDD and optimize the quality of care provided
society’ (p. 315) utilized less outpatient care and to them (Lunsky & Canso, n.d.). Training
more emergency services. New York City health programs for physicians, such as the Leadership
rankings within the general population have Education in Neurodevelopmental and Related
consistently found a greater number of Bronx Disabilities (LEND) program, prepare them to
residents with poor self-rated health, no insurance, address the unique health needs of people with
decreased access to primary care, a higher IDD (Ervin & Merrick, 2014).
prevalence of preventable hospital stays, and Self-management programs for community-
higher rates of psychiatric ER visits than any dwelling adults with IDD have also been piloted
other region in New York City. (Robert Wood to improve health outcomes and decrease ER/
Johnson Foundation, 2013; Office of Mental hospital utilization rates. Bazzano et al. (2009)
Health [OMH], 2014). implemented a 7-month Healthy Lifestyle Change
Program (HLCP) tailored to the needs of people
Clinical Implications with IDD. The program included peer mentorship
Programmatic and policy-level interventions have and biweekly education aimed at improving
been piloted to improve quality outcomes and knowledge, attitudes, behavior, diet and exercise.
reduce emergency-related cost among people with HLCP resulted in weight loss for 75% of its
IDD. These include patient-centered medical participants, a number of positive lifestyle changes,
homes (PCMHs), Accountable Care Organiza- an increase in community capacity and overall
tions (ACOs) and the IDD-specific behavioral improved quality of life for participants from pre- to
health intervention, Systemic Therapeutic As- post-intervention.
Yamaki, K., Wing, C., Mitchell, D., Owen, R., Department of Occupational Therapy; Brigida
Heller, T. (2017). The impact of Medicaid Hernandez, YAI Network; and Paul W. Scott,
managed care on emergency department and
University of Pittsburgh, Department of Health
primary car utilization among adults with intellec-
tual and developmental disabilities [PowerPoint and Community Systems.
slides].