MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES

RESEARCH REVIEWS 12: 70–82 (2006)

A CASCADE OF DISPARITIES: HEALTH AND

HEALTH CARE ACCESS FOR PEOPLE WITH
INTELLECTUAL DISABILITIES
Gloria L. Krahn,* Laura Hammond, and Anne Turner
Child Development and Rehabilitation Center, Oregon Health & Science University, Portland, Oregon

People with ID represent approximately 2% of the population and, abilities, had no previous medical records for Suzanne, and had
as a group, experience poorer health than the general population. This difficulty understanding her. The caregiver staff could interpret
article presents recent conceptualizations that begin to disentangle health
from disability, summarizes the literature from 1999 to 2005 in terms of the much of Suzanne’s speech and nonverbal communication but
cascade of disparities, reviews intervention issues and promising practices, did not know Suzanne’s medical history. On physical examina-
and provides recommendations for future action and research. The recon- tion, the physician found a lump in Suzanne’s breast. At that
ceptualization of health and disability examines health disparity in terms of
the determinants of health (genetic, social circumstances, environment,
point, the office visit had already extended beyond 15 minutes,
individual behaviors, health care access) and types of health conditions and there was no time to address her combative behavior,
(associated, comorbid, secondary). The literature is summarized in terms of unidentified pain, and need for routine preventive care for aging
a cascade of disparities experienced by people with ID, including a higher adults.
prevalence of adverse conditions, inadequate attention to care needs, in-
adequate focus on health promotion, and inadequate access to quality
Suzanne’s experience is all too common among persons
health care services. Promising practices are reviewed from the perspective with intellectual disabilities (ID) and their care providers. People
of persons with ID, providers of care and services, and policies that influence with ID represent approximately 2% of the population, with
systems of care. Recommendations across multiple countries and organiza- anticipated growth due to increasing survival rates related to
tions are synthesized as guidelines to direct future action. They call for
promoting principles of early identification, inclusion, and self-determina-
improvements in neonatal care, nutrition, and socioeconomic
tion of people with ID; reducing the occurrence and impact of associated, conditions [Cooper et al., 2004]. As a group, people with ID
comorbid, and secondary conditions; empowering caregivers and family experience poorer health than the general population. This
members; promoting healthy behaviors in people with ID; and ensuring difference in health status is particularly evident for people with
equitable access to quality health care by people with ID. Their broadscale
implementations would begin to reduce the health disparity experienced by
more severe disabilities and is observed across the typical mea-
people with ID. © 2006 Wiley-Liss, Inc. sures used for population comparisons. Health disparities for
MRDD Research Reviews 2006;12:70 – 82. people with ID have been documented in mortality [Hollins et
al., 1998; Durvasula and Beange, 2001; Bittles et al., 2002],
Key Words: intellectual disability; health care; health disparities;
morbidity [Beange et al., 1995; Janicki et al., 1999], and quality
learning disabilities; health promotion; provider practices of life [Hensel et al., 2002].
The unmet health care needs of people with ID were
starkly illustrated in the early 1990s by the work of Helen

S
Beange, Michael Kerr, and other researchers [Beange et al.,
uzanne, 49 years old, currently lives in a group home in a large
1995; Kerr et al., 1996; Whitfield et al., 1996]. Much of the
city with two other housemates and two care attendants. In the
past six months, both staff members in her new home have research conducted subsequently has been reviewed elsewhere.
changed. Until a year ago she lived in a large residential facility Fisher [2004a] summarized selected literature published from
that provided in-house physician care; now she accesses health 1992 to 2002 from the perspective of the nursing profession,
care through local providers. She has moderate intellectual dis- noting high rates of mental health concerns and gaps in medical
ability, cerebral palsy (CP) with dysarthria, generalized tonic– care and health promotion involvement. Tuffrey-Wijne [2003]
clonic seizure disorder that is poorly controlled by medication, compiled the literature on palliative care for people with ID,
and recurrent muscle and joint pain. Several months ago the staff primarily around cancer care. Lennox’s presentation at the 2003
noticed that Suzanne seemed more agitated, resisted going on White Plains Conference on Health and Intellectual Disabilities
outings, and refused to take her medications. They also thought summarized the literature on the impact of health and social care
her head-banging and self-biting were increasing and that she
was losing weight. They arranged for a medical consultation *Gloria Krahn, Child Development & Rehabilitation, P.O. Box 574, Portland, OR
with a local physician. When Suzanne and her caregiver arrived, 97207-0574. E-mail: krahng@ohsu.edu
the physician was already running an hour behind schedule and Received 2 November 2005; Accepted 4 November 2005
Published online in Wiley InterScience (www.interscience.wiley.com).
had scheduled only 15 minutes for the appointment. The phy- DOI: 10.1002/mrdd.20098
sician had limited experience with adults with intellectual dis-
© 2006 Wiley-Liss, Inc.
delivery on the health status of people tinguishing impairment from environ- al. [2002] estimated that, for the general
with ID [Lennox et al., 2003]. ment, these integrative models begin to population, medical care is estimated to
The purpose of this article is to provide a means to tease apart health contribute about 10% and individual be-
summarize the literature on the health from disability and to identify and under- haviors contribute 40%. Other determi-
status of people with ID from 1999 to stand those factors that contribute to nants include genetics (30%), social cir-
2005, with particular emphasis on exam- health disparities observed for people cumstance (15%), and environment (5%).
ining the role of health care access in with disabilities. Health care access and environment
influencing health outcomes. Its intended The definition of several terms as- likely play a larger role for people with
contribution is to synthesize findings sists in understanding this new conceptu- ID, particularly for persons with ongoing
across multiple countries to illustrate that alization of health and disability: health conditions [Horner-Johnson et al.,
the health status of people with ID is Intellectual Disability (ID) is a dis- submitted for publication]. Fig. 1 depicts
adversely influenced by a cascade of dis- ability acquired before the age of 18 and how these determinants contribute to the
parities; disparities that can be addressed is characterized by significant limitations health disparities of persons with ID.
to improve health outcomes. The paper both in intellectual functioning and in We propose a conceptual frame-
(1) presents recent conceptualizations adaptive behavior as expressed in con- work to disentangle health from disability
that begin to disentangle health from dis- ceptual, social, and practical adaptive that is based on determinants of health
ability, (2) summarizes the literature from skills [American Association of Mental (genetic, social circumstance, environ-
1999 to 2005 in terms of the cascade of Retardation (AAMR), 2002]. ment, individual behavior, and health
disparities, (3) reviews intervention issues Health is defined as a state of com- care access) and recognizes distinctions
and promising practices, and (4) provides plete physical, mental, social well being, among categories of health conditions
recommendations for future action and and not merely the absence of disease (associated, comorbid, and secondary).
research. [WHO, 2005]. Such a framework can begin to identify
Health disparities are defined in var- the contributors to health disparities in
ious ways that differ as to whether or not people with ID and how to address those
they attribute causality to the observed contributors. The observed poor health
The health status of differences [HRSA, 2000; Smedley et al., of the population of people with ID is
2002]. For this article, health disparity is
people with ID is defined as population-specific differences
seen as resulting from a combination of
factors: genetic factors that contribute to
adversely influenced by a in key health indicators between people
higher rates of associated conditions and
with and without ID, without inference
cascade of disparities; to the cause of these differences.
their subsequent sequelae (e.g., thyroid
problems associated with Down syn-
disparities that can be It is important to distinguish
drome); social circumstances that are
among different types of health condi-
addressed to improve tions experienced by people with ID.
characterized by low income, social iso-
lation, vulnerability to abuse, and inade-
health outcomes. These conditions can all contribute to
quate attention of care providers to
measured health disparities but reflect
different points of entry along the cascade health needs; environments (e.g., expo-
of disparities. These conditions are: sure to unhealthy levels of lead or other
Associated health conditions refer to contaminants; environments physically
RECONCEPTUALIZING inaccessible for people using wheel-
HEALTH AND DISABILITY medical conditions that are regarded as
having led to the impairment in intellec- chairs); individual behaviors that contrib-
The conceptual differentiation of ute to secondary conditions because of
health from disability is relatively new. tual functioning [McNeil and Binette,
2001]. CP, Down syndrome, and en- inadequate knowledge about health-pro-
Until recently, disability was presumed moting lifestyles (e.g., oral health care,
equivalent to illness, with similar expec- cephalitis are examples of associated
health conditions leading to ID. nutrition), cognitively inaccessible treat-
tations of dependence, inactivity, and ex- ment programs for high risk behaviors
clusion from participation in community Comorbid conditions refer to con-
comitant but unrelated pathological or (e.g., smoking, alcohol and drug use, an-
life that are typically associated with ill- ger management), and residential settings
disease processes that have an adverse im-
ness [Krahn, 2003]. People with disabil- that support inactivity and poor nutri-
pact on health [Steadman, 2005]. For
ities were reputed to necessarily have tion; and inadequate health care access
people with ID, comorbid conditions
poorer health. However, models of dis- that contributes to poor management of
would be adverse health conditions, such
ability have evolved from the writings of as cancer or hypertension, that are nei- associated conditions (e.g., seizure disor-
the sociologist Nagi in the 1950s to con- ther caused by nor occur as a result of the ders), comorbid conditions (e.g., late-
sider both the attributes of the environ- intellectual disability. stage diagnosis of cancers, untreated car-
ment as well as of the individual [Drum Secondary conditions refer to those ies), and secondary conditions whose
et al., 2005]. The International Classifi- conditions that a person with a preexist- occurrence or impact could be mini-
cation of Functioning, Disability, and ing disability experiences at higher rates mized with better care (e.g., recurrent
Health (ICF) [WHO, 2001] reflects such than the general population and are gen- pneumonia, bowel obstruction, depres-
an integrative model. The ICF recog- erally regarded as preventable [Simeon- sion). Interventions may be directed at
nizes what disability scholars have been sson and Leskinen, 1999]. For people improving social circumstances, increas-
saying for decades—that the physical and with ID they may include decubitus ul- ing caregiver attention to poor health,
social environments in which people cers, bowel obstructions, and depression. altering individual lifestyle behaviors, or
with impairments live actually contribute In their review of the variance that improving access to quality health care.
to many of the disabilities they experi- could be attributed to early mortality as a Unfortunately, the extant literature has
ence [Bickenbach et al., 1999]. By dis- measure of health outcome, McGinnis et not adequately differentiated among
MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL. 71
 Fig. 1. Representation of determinants of health and health status disparities for persons with intellectual disabilities.

these different types of contributors to for hearing and vision problems [Kerr et in findings related to differences in meth-
health disparities. al., 2003]. Researchers have advocated ods. Table 1 summarizes findings across
for soliciting the input of people with ID studies on prevalence rates of a number
A CASCADE OF DISPARITIES [Koch et al., 2001] and several studies of conditions, with studies varying in
FOR PEOPLE WITH have looked at this specifically [Cea and sample, conditions studied, and criteria
INTELLECTUAL DISABILITIES Fisher, 2003; Schwartz and Rabinovitz, for noting presence of a condition.
A systematic literature review was 2003]. These findings suggest that proxy
conducted using MEDLINE, PsychINFO, reporting should only be used judiciously Studies conducting physical examinations of
and Cinahl dating from 1999 through and with knowledge of its limitations. groups of ID
2005. Search terms included: “mental re- The findings of these articles are Several studies were based on med-
tardation,” “disabled persons,” “develop- summarized as a cascade of disparities. ical examinations and chart reviews to
mental disabilities,” “health services ac- The effects of differences in prevalence establish prevalence rates of health prob-
cessibility,” “primary health care,” rates of adverse health conditions and lems. Kerr and his colleagues studied a
“barriers,” “obstacles,” “stigma,” “ac- behavior disorders are compounded by large sample of people with ID (most
cess,” and “hinder.” All results were lim- disparities in attention to care needs, with moderate to profound ID) prior to
ited to English language publications and which are further impacted by disparities discharge from a large institution in the
those focusing on adults (19 plus years). in preventive care and health promotion United Kingdom between 1995 and
Many of the papers that were excluded practices, and all are finally impacted by 1999 [Kerr et al., 2003]. They ascertained
addressed broader issues of intellectual disparities in equitable access to health high rates of epilepsy, skin problems, lac-
disability (e.g., residential workforce, care for people with ID. We believe that erations or fractures, and respiratory dis-
parents with ID). Additional articles were it is the culminating effect of this cascade orders. Approximately one-half were
obtained through hand searching and of disparities that results in the poor medicated for behavioral problems; 96%
through review of recent presentations at health status of persons with ID. were prescribed two or more medica-
the International Association for the Sci- tions and 22% were prescribed seven or
entific Study of Intellectual Disabilities Disparities in Prevalence of Adverse more. In the United States, Lewis et al.
(IASSID) and the DisAbility Forum of Health Conditions and Behavioral [2002] examined a representative sample
the American Public Health Association. Disorders of adults (mild to profound ID) living in
For this paper, ID is used as a general As described below, health condi- a variety of community settings. More
term to capture research about people tions that were repeatedly documented at than a quarter of their sample had epi-
with “mental retardation,” “develop- relatively high rates in persons with ID lepsy, about half were receiving psycho-
mental disabilities” (with emphasis on in- include epilepsy, behavioral/mental tropic medications, more than half were
tellectual disabilities), and “learning dis- health problems, fractures, skin condi- overweight or obese, and only 16% had
abilities” as used in the United Kingdom tions, poor oral health, and respiratory dental status rated as “good.”
to reflect significant ID. Where available, disorders. Intellectual disability, particu-
level of severity of disability is indicated. larly severe and profound ID, was asso- Studies using extant data
The review also provides some detail on ciated with high mortality rates due to A number of studies were based on
the research methods used and prioritizes cardiovascular diseases, intestinal obstruc- record review and linkage of extant data
studies using methods with a stronger tion, pneumonia, trauma, and other sets. A UK population-based study with
evidence base. causes [Shavelle and Strauss, 1999; Patja record-linkage across multiple data sets
A methodological issue in under- et al., 2001]. Unrecognized problems determined epilepsy prevalence and
standing observed findings on health re- with vision and hearing were also re- health service utilization among people
lates to the informant in data collection. ported repeatedly. Studies differed in with ID [Morgan et al., 2003]. Findings
Proxy reporting by direct caregivers has methodologies used to collect data (e.g., indicated that epilepsy prevalence during
been implicated in substantial underre- physical examinations, database linkages, the 5-year study period for the entire ID
porting of problems, most dramatically questionnaire surveys), with differences population was 16.1%, with much
72 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL.
 greater likelihood of epilepsy in people
who had spent at least 1 year in an insti-

Hearing: 9–57*
Vision: 20–67*
tution (33%) compared with those dwell-

Impairments

Hearing: 27

Hearing: 19

Hearing: 89
Vision: 34

Vision: 32

Vision: 99
ing exclusively in the community (3%).

Sensory
There was a strong, positive correlation
between prevalence of epilepsy and so-
cioeconomic deprivation [Morgan et al.,

Psychiatric/
2000]. A small sample record review of

Behavioral

21–47**
nonambulatory adults with profound ID
in the Washington, DC area documented

25

26

49

53
high rates of epilepsy, constipation, skin
problems, fractures, respiratory concerns,
Cardiovascular

contractures, and poor dental hygiene,

with more than 30% taking more than

8–45*
three medications [Kozma and Mason,
14

17

2003].

9
Frequencies of Conditions in Persons with Intellectual Disabilities

Gastrointestinal

Studies using surveys

Studies using proxy-completed
surveys have also documented high rates
of health problems. Survey data from a
11

10
8

large sample of parents and caregivers of

children and adults with severe or pro-
Respiratory

found ID in day care institutions in Tai-

7–19*

wan revealed similarly high rates (41%) of

11

33

44

adverse health conditions (i.e., epilepsy,

8

psychosis, skin disorders) [Lin et al.,

Lacerations
Fractures/

2003]. Follow-up data on the New Zea-

land population of people with ID aged
50 years and older following a period of
43

11

deinstitutionalization and reduced public

Dermatologic

support indicated high rates of neurolog-

ical disorders, epilepsy, psychiatric con-
37–63**
Problems (% of sample)

ditions, and chronic physical conditions

(i.e., musculoskeletal, cardiovascular, re-
33

46

40

spiratory, digestive) [Hand, 1999].

Neurologic/

Two studies used similar surveys

completed by caregivers to ascertain
epilepsy

21–49*

health conditions of large samples of

25!
17

18

34

70

older adults with ID in the United States

[Janicki et al., 2002] and in Israel [Mer-
Record review

Record review

Record review
examination

examination

rick et al., 2004]. Both studies reported

Physical

Physical

health status ratings decreasing and prev-

Method

Survey

Survey

Survey

alence of most adverse health conditions

increasing with age in a pattern similar to
the general population. An exception
1,063 age 50!

1,371 age 40!

2,282 age 40!

was mental health conditions, which

Table 1.

MR in care
dential care
nity dwell-

in residen-
353 commu-

55 profound
589 in resi-

were noted to decrease with age in both

in group

tial care
homes

studies. Similar to other studies [Beange

Sample

ing

et al., 1995; Lewis et al., 2002], high rates

of neurological and psychiatric condi-
tions were observed. Comparison of
New Zealand

Washington,
DC, USA

their findings with comparable general

NY, USA

CA, USA
Location

US population data led the US authors to

Israel

speculate that proxy reporting leads to

UK

underrecognition of health problems in

persons with ID.
Merrick Israel et al. [2004]
Kozma and Mason [2003]

Mental health
Janicki et al. [2002]

Lewis et al. [2002]

Across the studies reviewed, ap-

Kerr et al. [2003]

**Decreasing with age.

*Increasing with age.

proximately one-third to one-half of

Hand [1999]

each sample was medicated for psychiat-

ric concerns. Record reviews indicated
Study

that psychiatric diagnoses had not been

made to support this level of medication
MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL. 73
use. In the United States, Lewis et al. vision problems were found by Isralowitz taining health places great importance on
[2002] reported that 36% of their medi- et al. [2003]. Importantly, these problems where people with ID live and who pro-
cated group had no identifiable diagnosis. are not recognized by their caregiving vides support to them. The recent liter-
In a large UK study, 11% of the sample staff. In the United Kingdom, nursing ature documents that differences in
was diagnosed with psychoses, 18% had caregivers assessed vision as “perfectly health status vary with the nature of care-
depression/bipolar disorder, and 48% normal” for 49% of their clients although giving arrangement.
displayed behavior problems that inter- less than 1% were assessed as having nor-
fered with assessment [Kerr et al., 2003]. mal vision on physical exam. Similarly,
In a study in Australia, mental health Residential effects
nursing staff reported 74% to have perfect
concerns were noted as two to four times Because of the recent trend in
hearing, while formal assessment indi-
more likely in people with ID, with elder Western countries to have people with
cated only 11% to have normal hearing,
ID populations reaching prevalence rates ID live in the community in their own
with 61% having mild hearing loss, 15%
of almost 70% for mental health problems individual homes or smaller group homes
having moderate to severe loss, and 13%
when dementia was included as a mental and not in large congregate care facilities,
having profound or severe loss. For
health diagnosis [Torr and Chiu, 2002]. much of the recent literature addresses
many, removal of earwax, not a routine
Higher use of psychological and psychi- the impact of the closure of large con-
care procedure, addressed mild hearing
atric services was predicted by severity of gregate care facilities. This trend toward
loss [Kerr et al., 2003].
behavior problems [Jacobson, 1998], by greater community-based living is not
Oral health is a significant problem
being older, having milder ID, and living without its detractors [Tabatabainia,
for people with ID. People with ID were
alone [Driessen et al., 1997]. A review of 2003]. While much of the recent litera-
more likely to have missing or decayed
the literature on substance abuse in peo- ture documents improvements in quality
teeth and less likely to have fillings than
ple with ID concluded that rates of sub- of life in community-based settings, it
the general UK population [Cumella et
stance abuse are likely not higher than for also indicates ongoing concerns about
the general community, but specialty unmet health care needs and challenging
training by treatment staff and better co- behavior problems.
ordination between service systems are Across the studies A major caution about changing
from large residential settings to smaller
needed [Clarke and Wilson, 1999].
Mental health problems often reviewed, approximately community-based settings relates to
present with nonspecific behaviors, lead- one-third to one-half of safety and quality of health care [Shavelle
and Strauss, 1999]. Health care providers
ing to “diagnostic overshadowing” in
which behavior stemming from the men- each sample was in many countries have raised concerns
about compromised health care quality
tal health disorder or another physical medicated for psychiatric for individuals with ID living in the com-
disorder is erroneously attributed to the
ID. This exemplifies the problem of con- concerns. Record reviews munity [Hand, 1999; McGilloway and
Donnelly, 1999; Nottestad and Linaker,
fusing associated or comorbid conditions
with ID. Problems in presentation or in
indicated that psychiatric 1999; Lewis et al., 2002; Lennox et al.,
the care of mental health concerns in diagnoses had not been 2003; Cornwell, 2004]. Specific con-
cerns are that persons with ID living in
persons with ID include atypical presen-
tation, communication difficulties, lack
made to support this the community need access to skilled
of continuity of care, no valid diagnostic level of medication use. health care clinicians and direct care pro-
system, difficulties in accessing care, and viders who are knowledgeable about the
inadequate training of health profession- person and their conditions; without
als. Several studies noted a decrease in such care there is greater risk for inade-
prevalence of mental health concerns al., 2000], with concerns about high quate attention to potentially life-threat-
with age [Janicki et al., 2002; Merrick et turnover and less awareness of dental ening conditions. A follow-along study
al., 2004], which is consistent with find- needs in direct care staff. Lewis and col- of persons with ID in Northern Ireland
ings for the population of US adults with leagues [2002] noted higher rates of who moved into community settings
disabilities generally [Drum et al., 2003], “poor” and lower rates of “good” oral found that after one year most had ac-
although contradictory findings were health for persons with ID living in com- cessed a physician and were satisfied with
noted in Australia [Torr and Chiu, 2002]. munity care facilities in the United States their care, but less than one-half had re-
compared with those living with family ceived dental care and most reported
Vision, hearing, and oral health or friends or living in their own homes. need for more one-on-one support to
While earlier studies focused their Poor oral hygiene is implicated as a pri- facilitate greater integration into their
attention on seizure disorders and life- mary cause, along with lack of preventive communities [McGilloway and Don-
threatening secondary conditions, studies care [Cumella et al., 2000; Lewis et al., nelly, 1999]. A California study com-
of the past 5 years have brought greater 2002]. pared three types of community-living
attention to treatable associated, comor- settings across multiple health indicators.
bid, and secondary conditions that greatly Disparities in Attention to Care Compared with persons with ID living in
impact quality of life. The Special Olym- Needs the community with family or friends or
pics program has screened large numbers People with ID rely on their sup- living in the community on their own,
of athletes with ID for vision problems port providers for the routine activities of persons living in community-based
and found 40% to have ocular abnormal- their daily life. These include support to group homes were more likely to have a
ities, with almost 20% reporting never identify health care concerns, communi- personal dentist or physician, more likely
having had an eye examination [Wood- cate with health professionals, and engage to have a normal body mass index, and
house et al., 2004]. Similarly high rates of in health-promoting behaviors. Main- less likely to be obese [Lewis et al., 2002].
74 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL.
 Large congregate care residency Disparities in Preventive Care and United States than the United Kingdom.
has been regarded as contributing to be- Health Promotion Lewis et al. [2002] reported 54% of their
havior problems because of separation People with ID experience lower California sample to be overweight or
from family, risk for abuse, and disem- rates of preventive care and health promo- obese, while Kerr et al. [2003] reported
powerment in decision making. How- tion practices than the general population. only 22% of the UK residential sample as
ever, research findings have not consis- In addition to hearing and vision, the re- overweight. In the California study,
tently documented improvement in cent literature addresses the specific con- there was a greater risk for obesity for
challenging behaviors with community- cerns of preventive screening and manage- individuals living at home (67%) or with
based residence. Conroy et al. [2003] ex- ment of chronic conditions, overweight/ family or friends (57%) compared with
amined outcomes 6 years after closure of obesity, and nutrition/bowel impaction. those living in a group residence (47%).
a large institution in Oklahoma and The potential underdiagnosis of Those living at home also reported more
chronic conditions that require ongoing smoking and drinking, while people liv-
found increases in community integra-
management (e.g., hypertension, diabe- ing in a group residence were more likely
tion and decreases in challenging behav-
tes, arthritis) was implicated in several to have current tuberculosis tests and flu
iors following deinstitutionalization. A vaccines [Lewis et al., 2002]. In both the
recent studies [Janicki et al., 2002; Lewis
study in North Carolina following a class U.S. and Israeli studies of aging persons
et al., 2002; Merrick et al., 2004], vali-
action suit to reduce institutionalization dating the earlier findings of Beange et al. with ID, less than half of the participants
in psychiatric facilities found that prob- [1995]. A small sample study of preven- engaged in regular physical activity or
lems with aggressive behaviors persisted tive care and health promotion practices exercise [Lewis et al., 2002; Merrick et
although improvements in satisfaction in the United Kingdom found that, com- al., 2004].
with one’s life situation were reported pared with matched non-ID controls, The importance of attending to
[Dudley et al., 1999]. Contrary to expec- persons with ID reported more preven- nutrition and bowel management for
tations, a large prospective cohort study persons with severe to profound ID is
in Norway found significant increases in well recognized. Several studies report on
the frequency of behavior problems and highly effective interventions. A UK ret-
in the number of people exhibiting be- While much of the recent rospective review of dietetic referrals
noted significant improvements in body
havior problems after (1995) compared
with before (1987) deinstitutionalization.
literature documents weight and a general shift to improved
This occurred despite improved physical improvements in quality nutrition and reduced symptoms in other
areas (e.g., amenorrhea, diarrhea, in-
living conditions in the community and
was accompanied by decreased use of
of life in community- creased balance and mobility, improve-
psychiatric and psychological services based settings, it also ment in pressure sores) [Jolly and Jamie-
son, 1999]. Similarly, Kozma and Mason
[Nottestad and Linaker, 1999]. indicates ongoing [2003] reported that an aggressive bowel
concerns about unmet management program reduced incidence
of impaction from 50 to 7% in their
Care delivery systems health care needs and sample.
In countries in which persons with
ID are still largely cared for by family
challenging behavior Disparities in Equitable Access to
members, access to services is highly in- problems. Health Care.
fluenced by family attitudes towards ID The research examining health ser-
and services [Shrestha and Weber, 2002]. vices reflects several promising directions
Changes in service delivery systems have for interventions and additional research.
been shown to lead to improved health tive care and health promotion counsel- One strand of research examined health
outcomes. The effects of a US family- ing in the past year (health check, blood care utilization and factors that predict
directed support program were examined pressure, eye, hearing, contraception/ service utilization. A second strand re-
with a control group design and docu- sex, smoking, diet, alcohol, and exercise). flects the growing body of literature on
mented that enrolled families used more However, for the controls, most care oc- practice issues of health care clinicians,
services, were more satisfied with ser- curred in the general practitioner’s office, particularly physicians.
while about one-half of the health pro-
vices, and reported less unmet need, with
motion care for people with ID occurred Health care utilization
behavior problems representing the
outside of the general practitioner’s office The findings of several studies in-
greatest unmet need [Heller et al., 1999].
in the day center or local specialist hos- dicate greatest service use by those with
Direct support staff turnover, wages, and pital [Hensel et al., 2002]. A national greatest need. For individuals with dual
vacancy rates were demonstrated to be U.S. study by the present authors also diagnoses of ID and psychiatric problems,
barriers to quality care, and medical status found that family practice and internal mental retardation was not associated
of the persons with ID did not relate to medicine physicians reported engaging with length of psychiatric hospitalization
quality supports [Larson et al., 2004]. less frequently in a range of health pro- in New York but did predict one-to-one
These findings are noteworthy given that motion practices for their patients with staffing and more restrictions on moving
the type of persons served in communi- physical disabilities compared with pa- into the community at discharge. In a
ty-based programs has shifted from the tients without disabilities [Downs et al., British study, people with ID who also
late 1980s and now includes more people 2004]. had epilepsy were admitted to hospital
with more significant limitations and care Being overweight may be more of 2.5 times more frequently than those
needs (e.g., 40% nonverbal) [Mansell et a problem in individual settings than without epilepsy. Institutional dwelling
al., 2002]. group homes or more of a problem in the persons were less likely to be seen as
MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL. 75
outpatients or admitted as inpatients whites were comparable in a population [Cook and Lennox, 2000; Iacono et al.,
compared with community-dwelling study of the Leicestershire Learning Dis- 2003]. Content areas of greatest concern
persons with ID and epilepsy, perhaps abilities register for 1991. However, included human relations/sexuality, be-
reflecting the availability of care in insti- South Asian families used significantly havior/psychiatric problems, preventa-
tutions. There were no differences in fewer psychiatry, residential care, and re- tive and primary care, and complex med-
death rates between persons with and spite care services and reported more un- ical problems [Phillips et al., 2004].
without epilepsy, although follow-up of met needs for day care, home help, and Caregiver concerns related to doctors’
community-dwelling individuals may be sitting services [McGrother et al., 2002]. and nurses’ lack of knowledge of ID,
insufficient to determine differences Race of the person with ID also appeared reliance on caregivers during hospitaliza-
[Morgan et al., 2003]. as a significant variable in predicting ser- tions, and the unavailability of local spe-
Several studies used the Andersen vices received and services needed in the cialty services [Iacono et al., 2003]. A
Behavioral Model to examine health care United States [Pruchno and McMullen, survey of GPs across Australia indicated
utilization by persons with ID. Using lo- 2004]. Service providers have described they regarded health promotion activities
gistic regression modeling, a study in language difficulties, cultural differences, as important (i.e., hearing and vision
Taiwan identified predictors to inpatient and perceived lack of knowledge by fam- screen, dental, medication review, thy-
care use by people with ID as having an ilies about disabilities, resources, and the roid testing for people with Down syn-
illness, being younger, and needing reha- service system as barriers to providing drome, health screens, nutrition advice,
bilitative care. Common barriers to seek- quality care to Asian families in the lifestyle advice, psychiatric disorders,
ing care included refusal to cooperate by United States [Choi and Wynne, 2000]. comprehensive annual) and agreed on
the person with ID, assessment that the their responsibility for comprehensive
illness was not serious, inability to find a care (except for dental). However, they
doctor, and transportation [Lin et al., reported engaging in such comprehen-
2003, 2004]. In a large US study, While the most popular sive care infrequently [Lennox et al.,
Pruchno and McMullen [2004] inter- 2000]. U.S.-based surveys of physicians
viewed mothers of adult children with
solution appears to be a have found highly similar results. The
ID about their use and unmet needs for call for increased training most common concerns about care in-
seven types of services. Logistic regres- cluded communication, understanding,
sion using the Andersen model identified of health care providers, and continuity of care, and less frequent
different variables that predicted different we maintain that were problems with dementia or behav-
types of services received and needed. ior [Kerins et al., 2004].
For example, adult children with ID systemic changes for
were more likely to receive psychology sustained improvement INTERVENTION ISSUES AND
services if they were black, violent, and PROMISING PRACTICES
noncompliant. Predictors for unmet den- will require change at More widespread awareness of the
tal needs included being black, mother multiple levels. health disparities experienced by persons
having difficulty in paying bills, living in with ID has resulted in new practices that
a community with low to moderate lev- provide promise for improving health
els of spending on disability services, be- outcomes. However, a number of issues
ing nonviolent, and being noncompliant. Clinician practices preclude adoption of “easy answers.”
This approach provides a valuable re- Health care clinicians play a critical These include the dilemma of promoting
search model for examining specific types role in creating quality health care. The self-determination while focusing on tar-
of service utilization and need. health care systems of different countries geted health goals, the persistently held
The research also consistently indi- rely on different professions to play cen- negative attitudes towards persons with
cates that the behavioral challenges and tral roles in primary health care, includ- ID, and the need to ensure that health
psychiatric conditions of persons with ID ing physicians, nurses, occupational ther- practices and outcomes are sensitive to
are not adequately addressed. In both the apists, and social workers. In Australia, diverse cultural values and practices.
Kerr et al. [2003] and Lewis et al. [2002] the general practitioner (GP) provides While the most popular solution appears
studies, a much larger proportion of to be a call for increased training of health
and coordinates care for persons with ID;
study participants were receiving antipsy- care providers, we maintain that systemic
the United Kingdom relies more on a
chotic or antidepressant medications than changes for sustained improvement will
had a psychiatric diagnosis in their chart. range of specialists; Scotland emphasizes require change at multiple levels. There-
In the United Kingdom [Halstead et al., the role of specialist midwives and nurses; fore, we use a person–provider–policy
2000], community-dwelling persons while different areas of the United States framework to summarize the literature
with ID who saw community clinicians rely on family practice, internal medicine on promising practices.
received less frequent primary care than physicians, and nurses. In addition to
people in residences, with behavioral dis- provision of medical care, the role of the Issues Impacting Interventions
turbance and severe disability predicting health care clinician often includes advo- The principle of self-determination
more contact with primary care. Lack of cacy and information about services for persons with ID is generally endorsed
psychiatric diagnoses was again noted, [Hand, 1994, 1999]. at a conceptual level, but providers and
suggesting inadequate specialty care. Much of the research examining service systems have struggled with how
physician practice in serving people with to support self-determination while also
Culture and service use ID has been conducted with Australian providing quality services to achieve tar-
Cultural differences appear to play GPs. GPs’ concerns related to communi- geted health outcomes. Askheim [2003]
a role in service utilization. Prevalence cation, knowledge about resources, con- discussed this dilemma from a Norwe-
rates of ID between South Asians and tinuity of care, and reimbursement rates gian perspective. Friedman et al. [1999]
76 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL.
provided a valuable exploration with case vider [Freedman and Boyer, 2000; Fran- predictability for their family member
examples of two core ethical issues in cisco and Carlson, 2002]. Attention to with ID [Askheim, 2003]. In the United
caring for persons with ID— how to sup- cross-cultural issues will need to be a part States, a consumer-directed family sup-
port autonomy and empowerment while of all practices. port program for adults with ID led to
providing professional guidance and more use of services, greater satisfaction
treatment and how to determine the bal- Person-Based Practices with services, and fewer unmet service
ance between individual good and com- The first action step outlined in the needs relative to a control group [Heller
mon good. Their writing provokes U.S. Surgeon General’s report [Alex- et al., 1999]. Holburn et al. [2000] de-
thoughtful consideration that can serve as ander, 2002] to improve the health of veloped measures for assessing the pro-
a philosophical basis for improved prac- persons with ID is to “educate and sup- cess and outcomes of person-centered
tices. port individuals with MR, their families, planning that should be useful in future
Negative attitudes toward persons and other caregivers in self-care and well- research.
with ID have been documented across ness” (p. 3). A range of issues have been
numerous groups. Yazbeck et al. [2004] outlined to support people with ID to be Provider-Based Practices
note that Australian students’ and disabil- partners in their own good health [Marks A number of issues have been
ity services professionals’ attitudes toward and Heller, 2003]. Comprehensive identified as relevant for professional
persons with ID were more positive than health promotion interventions have training programs. Friedman and col-
the general population’s, with more pos- been developed specifically for adults leagues [1999], along with numerous
itive attitudes related to greater endorse- with mild ID that address topics such as other authors [Koch et al., 2001; Kerr et
ment of community inclusion and less nutrition, physical activity, preventive al., 2003; Tuffrey-Wijne, 2003; Kerins et
supportive of eugenics. Among senior care, rest, and stress management. One al., 2004], have called for the standard
psychiatry residents in Canada, males program is the Healthy Lifestyles curricu- and systematic inclusion of intellectual
were more likely to hold excluding atti- lum that is based on a self-determination and developmental disabilities in curric-
tudes toward persons with ID than fe- philosophy, is community-based, em- ula for health care providers. Addition-
males; and specialized training in ID in- ploys persons with ID as cotrainers, and ally, problems have been described in the
creased the extent to which residents uses ongoing follow-up to achieve self- transition from pediatric care to adult sys-
regarded persons with ID as similar to selected goals. Implementation of Healthy tems [Banta, 2004], with many efforts
themselves [Ouellette-Kuntz et al., Lifestyles demonstrates that a relatively underway to address transition barriers.
2003]. In Australia, more than half of brief intervention with ongoing mentor- Data from a small-sample study in
medical school and dental school deans ing can support adults with mild ID to the United Kingdom indicate that fami-
and a third of medical residency program effectively change health behaviors lies generally preferred the consistency in
directors reported their alumni as not suf- [Drum et al., 2004]. A longer, more health care provider that lifespan services
ficiently knowledgeable or capable of structured, and center-based health pro- provided [Carlson and Hyde, 2003].
providing treatment for persons with ID. motion intervention based on the trans- While multidisciplinary or interdiscipli-
Moreover, they did not regard clinical theoretical model, Exercise and Nutrition nary approaches are generally preferred
training in ID as a priority given faculty Health Education Curriculum for Adults with in the support of persons with ID, the
expertise and training time [Lennox and Developmental Disabilities, [Heller et al., recent literature also provides descrip-
Diggens, 1999]. Nursing students per- 2004b] also has documented its effective- tions of the role of specific disciplines.
ceive themselves as less skilled and less ness through a control group study These include a strengths-based approach
comfortable in caring for persons with [Heller et al., 2004a]. A health promo- for social workers [Russo, 1999], use of
disabilities, particularly multiple disabili- tion curriculum with demonstrated effi- specialist occupational therapists in resi-
ties, and rely more on intuitive ap- cacy with people with physical disabili- dential settings for persons with ID in the
proaches [Robey et al., 2001]. Similar ties, Living Well with a Disability United Kingdom [Adams, 2000], and
findings of reduced confidence in associ- [Ravesloot et al., 2005], has been suc- improved nursing care of elderly people
ating with people with ID compared cessfully implemented with people with with ID in the United States [Fisher,
with physical disability were reported for ID. Other health intervention programs 2004b]. A series of professional develop-
nurses and therapists in Northern Ireland have targeted specific topics. These in- ment articles on ID offer continuing ed-
[McConkey and Truesdale, 2000]. Self- clude the Women Be Healthy program ucation nursing credits in the United
selection into the helping professions ap- from North Carolina that addresses gy- Kingdom on topics such as health pro-
pears to play a part in who will work necological health issues for women with motion [Bollard, 2002], sexuality of per-
with people with ID, while training also ID [Lunsky et al., 2005], smoking pre- sons with ID [Savarimuthu and Bunnell,
appears to influence attitudes. vention and cessation programs for per- 2003], and improving services for people
Finally, social and cultural differ- sons with ID [Tracy and Hosken, 1997], with ID [Williamson and Johnson,
ences contribute to the barriers of health and resource materials on common bar- 2004]. Koch et al. [2001] advocate for
care for persons with ID in many coun- riers to health care of women with phys- the use of credentialed nurse consultants
tries. This was clearly documented for ical and intellectual disabilities [Welner, as case coordinators for persons with ID
the general U.S. population by the Insti- 1999]. in Australia, to expedite proper diagnosis
tutes of Medicine [Smedley et al., 2002] Research support is beginning to and improve access to treatment. Ne-
and reported specifically for persons with build for use of self-directed service sys- hring [2003] documents the nursing role
ID in several studies [Pruchno and Mc- tems that lead to improved outcomes. in the United States as it relates to per-
Mullen, 2004]. Health care professionals Person-centered personal assistance ser- sons with ID.
report that, in the context of cultural vice systems in Norway resulted in Lennox and his colleagues have ad-
differences, the person with ID or family greater influence by the person with ID dressed the need for improved knowl-
members may be reluctant to communi- in many aspects of daily life, and families edge and skills in primary care physicians
cate their needs to the health care pro- reported increased safety, stability, and by developing and pilot-testing a curric-
MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL. 77
ulum for general practitioners. Named National Health Service. It used “benefit nary interagency collaborations for im-
the CHAPS curriculum, it provides a groups ” (groupings by user characteris- proving mental health care for people
checklist for GPs’ use to ensure timely tics) and “resource groups ” (groupings with ID. The Special Olympics Healthy
and comprehensive attention to associ- by interventions) to categorize and ana- Athletes project has implemented a pro-
ated and secondary conditions related to lyze service provision for persons with ID gram of free health screenings for its ath-
specific diagnoses of ID [Lennox and [Comas-Herrera et al., 2001]. Another letes with ID, bringing an important fo-
Eastgate, 2004]. A recent case study study reported that cost of care in the cus on the vision and hearing needs of
booklet addresses the need for informa- United Kingdom is greater in commu- persons with ID [Special Olympics,
tion to guide practice for seizure disorder nity residences than in institutional care 2004]. Brahm and Brown [2004] de-
in persons with ID [Hollander et al., and demonstrated that the amount of at- scribe a clinical pharmacology service in
2005]. It provides basic prevalence and tention given to residents in Welsh group Oklahoma that provides consultations on
incidence data on epilepsy and behavioral homes was associated with the opera- medications for persons with ID and,
disorders in persons with developmental tional arrangements of the homes as well through collaboration with the local den-
disabilities, presents seizure management as on staffing ratios [Felce et al., 2003]. tal school, also provides 160-hour teach-
strategies through case studies, and solic- Economic data were used to argue for ing rotations for pharmacology students
its feedback through an evaluation form increased reimbursements to dentists for in the oral health care of persons with ID.
to monitor the effectiveness of the rec- dental care of persons with ID [Waldman To address mental health problems, a
ommended strategies. and Perlman, 2002]. practice-based evidence system for psy-
Communication is of particular Heyman et al. [2004] used com- chology services was developed in the
importance to the provision of quality plexity science to examine the phenom- United Kingdom for people with mild
health care to persons with ID [Beange, enon of providing complex health care ID to reduce symptoms of their psycho-
1996; Friedman et al., 1999; Lennox et for persons with ID in the United King- logical distress [Newman et al., 2003]. An
al., 2001; Bollard, 2002; Tuffrey-Wijne, dom. They argue that “the requirement emerging model of systems intervention
2003; Ziviani et al., 2004]. Lennox et al. to manage complex health needs with addresses working within a self-determi-
[2004] have developed an advocacy skills limited resources causes service providers nation model to increase nutrition
kit—“ASK”—to promote good commu- to simplify, standardize and routinise knowledge and improved food choices in
nication among persons with ID, their care” and that simplifying responses group homes for persons with ID
advocate/caregiver, and their GP. Topics makes organizations and experts system- [Humphries et al., 2004].
include confidentiality, negative percep- ically blind to circumstances that require
tions of people with ID, advocacy skills, customized solutions. They develop a NATIONAL AND
patient behavior, limited time of the GP, model that considers communication INTERNATIONAL
and patient behavior. skills, expertise, the social context of care, RECOMMENDATIONS FOR
and power and control in understanding FUTURE ACTIONS
Policy-Based Practices for Systems the complexity of organizations serving The need to improve the health of
of Care persons with ID. persons with ID has been formally rec-
A decade ago, Beange [1996] out- ognized by governments of numerous
lined a set of guidelines to improve med- Service coordination countries as well as by World Health
ical care for people with ID that would Numerous studies from different Organization (WHO), IASSID, Special
require systemic changes in training and countries discuss the need for increased Olympics, and other international
service delivery. This section reviews re- coordination among the agencies provid- groups. Holt and colleagues [2000] pro-
cently reported program advances at a ing services to people with ID. Increased vide an overview of the history, policy,
systems level. This literature includes coordination between primary care nurs- and current status of systems of care for
both economic analyses and arguments ing staff and disability services provider persons with ID in several European
for service provision, as well as descrip- has been advocated in Scotland [Powrie, countries. A number of countries, in-
tions of model systems of care. 2003]. There have been calls for in- cluding Scotland, the United Kingdom,
creased interagency and interdisciplinary Australia, Canada, and the United States,
Economic Studies coordination to address the mental health have published either national agendas or
The cost of health care for persons needs of persons with ID in the United position papers to address the health
with ID is substantial, and a number of States [VanderSchie-Bezyak, 2003], and problems of people with ID within their
approaches have been used to examine its an Australian paper describes a case study countries [Department of Health, 2001;
cost and effectiveness. Polder et al. [2002] of treating mental health needs of persons US Public Health Service, 2001; Scottish
conducted a cost-of-illness analysis asso- with ID that relies on agency coordina- Executive Health Department, 2002;
ciated with ID in The Netherlands for tion [Mohr et al., 2002]. However, be- NSWCID, 2003; Ouellette-Kuntz et al.,
1994. With total health care costs repre- yond these examples, there is little expli- 2004] (Table 2).
senting almost 10% of the Dutch econ- cation of what would be needed to A number of organizations and au-
omy, the care for persons with disabilities improve interagency coordination for thors have made recommendations to ad-
accounted for 8.6% of total health bud- improved services for persons with ID. dress the health needs of people with
get, with most of those costs funding disabilities [Beange, 1996; Cook and
permanent residential care of persons Model programs Lennox, 2000; Scottish Executive Health
with ID. Mental disorders, which in- A number of model programs pro- Department, 2000; Beacock, 2001;
cluded ID in their analyses, were by far vide promising directions for future de- WHO, 2001; Cooper, 2003; Kerr et al.,
the costliest type of disorder. velopments, although more evidence is 2003]. The recommendations vary by
A method for conducting compar- needed regarding their effectiveness. country and disciplinary perspective, but
ative cost analyses was developed based VanderSchie-Bezyak [2003] describes most can be summarized into five cate-
on the Healthcare Framework of the UK five model programs using interdiscipli- gories of recommendations that address
78 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL.
 Table 2: International Reports on Intellectual Disability and Health
Country Publication URL

United Kingdom Valuing People [2001] http://www.archive.official-documents.co.uk/document/

cm50/5086/5086.htm
United States Closing the Gap: A National Blueprint http://www.surgeongeneral.gov/topics/mentalretardation/
to Improve the Health of Persons
with Mental Retardation [2001]
Scotland Promoting Health, Supporting Inclu- http://www.scotland.gov.uk/Publications/2002/07/15072/
sion: The National Review of the 8573
Contribution of all Nurses and Mid-
wives to the Care and Support of
People with Learning Disabilities
[2002]
Australia New South Wales Council Health and People with Intellectual http://www.nswcid.org.au/systemic/position/health.html
for Intellectual Disability Disability [2003]
Canada International Think Tank on Addressing Health Disparities through http://www.igh.ualberta.ca/rhd/Synthesis/Disabilities.htm
Reducing Health Disparities and Promoting Equity for Individuals
Promoting Equity for Vulnerable with Intellectual Disability [2004]
Populations

Table 3. Recommendations for Future Actions

I. Promote principles of early identification, inclusion, and self-determination of people with ID in quality health care
a. Include persons with ID, family members, and caregivers in establishing health agendas, developing practices, and conducting research
b. Increase the understanding of persons with ID and family members about health treatment options and support their role in decision making
II. Reduce the occurrence and impact of associated, comorbid, and secondary conditions in people with ID
a. Ensure regular assessments by knowledgeable health care providers, which include
i. Management of associated conditions (e.g., epilepsy, cerebral palsy, specific conditions related to disorder)
ii. Review of medications
iii. Diagnosis and intervention for mental health and behavior disorders
iv. Adherence to general population guidelines for clinical preventive services to screen and treat comorbid conditions (e.g., cancers, diabetes, hy-
pertension)
v. Monitoring of hearing, vision, weight, height, skin, constipation, and oral health
b. Provide for regular dental care
c. Provide for specialty care to diagnose and manage genetic, neurological, psychiatric, behavioral, and nutrition conditions and problems
d. Provide health care coordination for persons with ID who have complex health needs
e. Conduct research to determine etiologies and syndromes for persons with ID to optimize their current and future health
f. Conduct research to distinguish preventable secondary conditions from associated conditions and from progression of disorders over the lifespan
g. Establish mechanisms to accurately monitor mortality and assess cause of death for persons with ID, particularly those in the community
III. Empower caregivers and family members to meet the health needs of persons with ID in their care
a. Provide assistance and supports to reduce the burden of care for families
b. Improve wages, benefits, and required credentials to assure greater continuity in non-family caregivers
c. Educate and train people with ID and their cargivers to
i. Monitor nutrition, height, weight, and physical activity and to record changes
ii. Prevent and treat chronic constipation
iii. Improve oral hygiene of persons with ID
iv. Monitor functional decline, particularly in older adults with ID
v. Communicate with health care professionals
d. Conduct research to determine effectiveness of training and intervention models with caregivers and family members.
IV. Promote healthy behaviors for persons with ID
a. Include persons with ID in all health promotion and preventive health practices across the lifespan

the cascade of disparities leading to poor health status and care needs, challenging changing conceptualizations of health
health outcomes of people with ID as behaviors that are poorly understood and and of disability, this poorer health status
presented in Table 3. managed, insufficient attention to indi- is now recognized as a health disparity
vidual health-promoting behaviors, and experienced by people with disabilities.
SUMMARY difficulty in implementing clinical pre- The reconceptualization of health and
The vignette of Suzanne that ventive services. It is now generally rec- disability presented in this paper directs
opened this paper illustrates the range of ognized that persons with ID experience future researchers to examine health dis-
contributing factors that have resulted in poorer health than the general popula- parity in terms of the determinants of
poor health in persons with ID— com- tion in many countries. Until recently, health (genetic, social circumstances, en-
plex health conditions that are poorly however, poor health was implicitly ac- vironment, individual behaviors, health
managed, frequent changes in direct care cepted as being an inevitable conse- care access) and through distinguishing
providers that result in inattention to quence of having a disability. With among types of health conditions (asso-
MRDD RESEARCH REVIEWS DOI 10.1002/mrdd ● DISPARITIES IN HEALTH AND HEALTH CARE ● KRAHN ET AL. 79
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