A literature review was conducted to analyze existing data on health status, health care utilization, and medical outcomes of persons with intellectual disabilities. We found that barriers exist, but evidence indicates that (a) individuals with intellectual disability and medical needs are living in the community, (b) people with significant medical conditions can be maintained in community settings, and (c) medical supports can and are provided to people with intellectual disabilities and allied medical conditions to enable community living. However, some people had unmet medical needs, and the availability of and access to community-based services were problematic for others. These contradictory findings indicate that it is possible to provide services in the community, but the service delivery system needs improvement.
In 2002, the U. S. Surgeon General issued a report calling for improvement in the health of persons with mental retardation. Goals listed included the training of health care providers, improved accessibility and quality of services, and financing procedures that ensure quality care. In addition, the report contained an acknowledgment of the need to expand community-based services, ensuring that those providers are well-prepared to meet the needs of this population (U. S. Department of Health and Human Services, 2002).
The need for community-based services, which has been rapidly growing for decades, was made even more pressing with the Supreme Court's landmark 1999 decision in the case of Olmstead v. L.C. Referencing the Americans With Disabilities Act (ADA), the Court ruled that the institutionalization of a person with a disability who, with proper support, would be able to and would choose to live in the community is unjustifiable discrimination. The decision compels new opportunities for people with disabilities to live in the community, regardless of the severity of their intellectual disability, mental illness, or medical/health conditions. It also raises questions about the nature and quality of health services available in the community to persons who might otherwise be institutionalized (General Accounting Office, 2001).
With the long-standing demands to live in the community, coupled with the backing of the Olmstead ruling, states are faced with the challenge of providing community services to all persons with disabilities. As stated in the Surgeon General's report, people with intellectual disabilities and allied medical and health conditions face many barriers to obtaining appropriate health care.
A decade ago, Hayden and DePaepe (1991) conducted a literature review that analyzed existing research on health needs of people with intellectual disabilities and possible barriers to community integration. We found that there were barriers to the provision of services to people with intellectual disabilities and allied medical conditions. Some people had unmet medical needs, and the availability of and access to community health services were problematic for others. However, findings also indicate that persons with varying degrees of needs for medical care did continue to live in the community. Individuals with significant medical conditions were placed and maintained in more normalized community settings, and medical supports were and are being provided to community members with complex medical needs.
Considering the age of the last health needs literature review (Hayden & DePaepe, 1991), we conducted a new review to update the original findings. We believe this update will be useful in informing state and federal policymakers in their future decisions. This brief summarizes the findings of this most recent review, for which we examined all identifiable literature on health status, utilization patterns of health care, and health care outcomes of persons with intellectual and other developmental disabilities living in the United States.
Research studies and reports for this review were initially identified by four means. First, we conducted a computer search of the Psychological Abstracts, Medline, and ERIC databases from 1989 to 2001 using appropriate descriptors (e.g., medical conditions, health status, utilization patterns, level of care needs, health-related outcomes, adults, intellectual or developmental disabilities, mental retardation, community, institutions, deinstitutionalization). In addition, the ancestry approach was used to identify other studies from the reference lists of previously identified studies. Finally, a manual review was conducted of all articles published from 1989 to 2001 in the American Journal on Mental Retardation, Journal of the Association of Persons with Severe Disabilities, Journal of Intellectual and Developmental Disabilities, Mental Retardation, and Research in Developmental Disabilities. Although these procedures yielded a number of related studies, few met the criteria of comparison. Because these issues are highly relevant for service planning, we asked all State Planning Councils, University Centers on Disabilities (formally called University Affiliated Programs), and state directors of mental retardation/developmental disabilities programs for any related reports or studies that the agencies may have conducted that addressed the following topical areas: (a) medical conditions, (b) health status, (c) utilization patterns, (d) level of care needs, and (e) health-related outcomes.
Eighteen studies and reports met one or more of the following criteria: (a) described the medical conditions, health status, health care access, health care outcomes, utilization patterns, and levels of care needed by groups of individuals with intellectual disabilities and related conditions who lived in institutional and community settings, different community settings, or institutions and were recommended for community placement; and/or (b) compared the medical conditions, health status, utilization patterns, level of care needed, and health-related outcomes of persons who moved to the community with their counterparts who lived in institutions and remained at those facilities; and/or (c) included types of medical care and services needed to retain persons with intellectual disabilities and medical needs in the community; and/or (d) identified barriers that inhibit the provision of community-based medical care and services; and/or (e) made recommendations for improving the community medical care and related health services.
Overview of Tables
The 18 studies are summarized in Tables 1, 2, and 3. Four of the 18 studies are cited twice in the tables because they provided information related to people who only lived in the community and to people living in institutions and their counterparts living in the community. Table 1 summarizes 4 studies related to the health status of individuals with intellectual disabilities who resided in the community and Table 2, 6 studies related to the health care outcomes and utilization patterns of people with intellectual disabilities who resided in the community. Table 3 summarizes 10 comparison studies related to health status, health care access, and utilization patterns of people who reside in institutions versus those living in the community.
Community Living: Health Status and Health Care Access
Table 1 summarizes four descriptive studies. Edgerton, Gaston, Kelly, and Ward (1994) examined the health status of adults who were living independently and adults residing in their parental homes or community residences. In the remaining three studies, the researchers examined previously institutionalized persons who were living in the community at the time of the study (Brown, 1998; Conroy, Lemanowicz, Feinstein, & Bernotsky, 1991; Conroy, Seiders, & Yuskauskas, 1998). The level of intellectual disability for the previously institutionalized individuals was either not specified (Brown, 1998), indicated as mild (Edgerton et al., 1994), or ranged from profound to mild mental retardation (Conroy et al., 1991, 1998). In the following discussion, we summarize the results from each study.
The sample in this study was composed of people who were discharged from state-operated congregate housing and care facilities and who moved into new community living arrangements. Over 4 years, almost half of the respondents saw the overall health of the movers as improved. Most respondents saw the quality of medical services as better or unchanged. In addition, they viewed the movers' overall welfare and well-being as better. About 20% said the movers' welfare and well-being had not changed. Moreover, the majority of respondents believed that access to special therapies and medical services had improved since the individuals moved to the community.
Conroy, Lemanowicz, Feinstein, and Bernotsky (1991)
Of the 569 individuals in this study, which encompassed two time periods, 72.4% of the sample lived in group homes that included 4 or more individuals. These homes were either Intermediate Care Facilities for the Mentally Retarded (ICFs/ MR) (64.1%) or non-ICFs/MR (35.9%). The remaining people lived in either community living arrangements of 3 or fewer people (22.3%); supervised, supported, or cooperative homes (3.3%); or community training homes (2.0%). Residential staff members served as respondents. Of the total number of individuals with mental retardation, respondents indicated in 1985 that nearly 2% would not survive without 24-hour medical personnel in 1985 and in 1990, 3.2% would not survive. Less than 6% had a life-threatening condition that required rapid access to medical care in 1985 and in 1990. Of the total number of individuals, 54.8% had no serious medical needs in 1985 and 49.4% in 1990. There was a slight increase of the percentage of people needing visiting nurses and/or doctor's visits in 1985 and in 1990. The average number of medications received each day among sample members increased from 1.6 in 1985 to 1.9 in 1990.
Conroy, Seiders, and Yuskauskas (1998)
These authors also used the person identified as knowing the subject best as the proxy respondent. Of the 40 people in supported living settings, respondents indicated that 18% of the sample had a major health problem, 23% had seizures, 3% had a physical disability, and 3% had a brain injury. However, 90% said that their general health was good to excellent. Moreover, 36% of the respondents said their health care was excellent, and 30% said health care was very easy to obtain. The median number of doctor visits was 8. Of the 981 individuals living in other community settings, 17% had a major medical problem, 22% had seizures, 17% had cerebral palsy, 15% had a physical disability, and 9% had a brain injury. Yet, 84% of the respondents rated the individuals' general health as good to excellent. In addition, 48% of residents rated their health care as excellent and 26% said their health care was very easy to receive. The median number of doctor visits was 11.
Edgerton, Gaston, Kelly, and Ward (1994)
The people in this study lived independently or in their parents' home. There was considerable diversity in health status and access to health care within each group. Individuals who lived on their own tended to have fewer physical disabilities and ailments than did their counterparts. People who lived in residential facilities or with relatives usually had adequate health care provided for them, whereas individuals who lived more independently had difficulty accessing health care. The majority of people living with their families or in congregate care residences had their health care needs monitored by others. Everyone who lived independently needed the assistance of a benefactor to make the initial appointment or to maintain contact with his or her physician or clinic. Those who lived independently had difficulty determining when they needed health care, communicating their needs to care providers, and understanding how to cooperate with the treatment plan. In addition, they had difficulty locating appropriate care. Few of these people received thorough physical exams. There was frequent failure of physicians to order pap smears and mammograms for women and to conduct prostate exams for men. The majority of both groups had difficulties in understanding medical terminology, and few could provide enough information for even a minimally adequate medical history. Most of the older individuals were not sufficiently literate to follow written instructions, and few could remember doctors' instructions well enough to carry them out.
Community Living: Health Care Outcomes and Utilization Patterns
Table 2 is a summary of 6 descriptive studies on health care outcomes and utilization patterns among people living in the community. In 3 of the studies, researchers examined individuals with intellectual disabilities but did not specify the level of intellectual disability (Friedman, Kastner, Pond, & O'Brien, 1989; Noll & Deschenes-Desmond, 1993; South Dakota, 1996). The remaining 3 studies included people with mild to profound intellectual disabilities (Conroy, 1995; Like & Spitalnik, 1992; Spitalnik & Like, 1994). In 4 of the 6 studies, the investigators indicated that their sample lived in the community, but they did not specify the type of living arrangements (Friedman et al., 1989; Like & Spitalnik, 1992; South Dakota, 1996; Spitalnik & Like, 1994).
In this study Conroy followed 520 members of a class-action lawsuit that resulted in institutional closure. In 1995, follow-up data were collected for 427 people, who had a range of additional disabilities. These disabilities included vision (44.3%), physical disabilities (40.7%), hearing (10.8%), cerebral palsy (8.9%), feeding tube (8.7%), autism (6.3%), and tracheotomy (0.5%). In 1990 and 1995, follow-up data were collected for 382 of the 520 class members. Of this number, 60.7% said that they received nursing services in 1990 and 30.6% said so in 1995. In addition, in 1990, less than 2% indicated they had “occasional or frequent problems in receiving medical services.” In 1995, 5.8% reported they had “occasional or frequent problems in receiving medical services.”
Friedman, Kastner, Pond, and O'Brien (1989)
Friedman et al. found through routine health care examinations that 20.3% of their sample of community residents with intellectual disabilities had previously unrecognized hypothyroidism and 1.2%, previously unrecognized hyperthyroidism. Twenty-six of the 66 individuals were found to have positive antimicrosomal, antithyroglobulin, and/or anti-body test results. There was a higher than expected number of people under 30 years of age with auto-immune hypothyroidism.
Like and Spitalnik (1992)
In this descriptive study, Like and Spitalnik documented the health services utilization of a group of 80 adults with intellectual disabilities and associated developmental disabilities who had received their primary care at a family practice center in New Brunswick, New Jersey. There were 346 family practice visits made by all 80 participants. In addition, they had 550 clinical laboratory tests, of which 84.7% included blood chemistry tests, hematology tests, automated blood chemistry profiles, urine analyses, and immunology tests. The median number of family practice clinic visits per person was four. People ages 21 to 44 years accounted for 78.6% of the visits. The median number of visits for people ages 21 to 44 was 4 and for people ages 45 to 73 was six. People with mild intellectual disabilities accounted for 35.8% of the visits, with those who had moderate intellectual disabilities accounting for 36.4% of the visits and with severe/profound intellectual disabilities, 24.9% of the visits. The median number of visits for individuals with mild intellectual disabilities was 4; for their counterparts with moderate intellectual disabilities, 4; and for people with severe/ profound intellectual disabilities, 3.
Noll and Deschenes-Desmond (1993)
The study involved people who lived in a range of congregate, community homes. Of the 256 participants, 97% had a primary care physician, 99.6% had seen the physician within the past 2 years, and 80% saw their physician in a private office. Within the preceding 2 years, 61% of the people saw an ophthalmologist; 31%, a psychiatrist; 27%, a neurologist; 17%, an orthopedist; 14%, a dermatologist, and 4%, a cardiologist. People rated the quality of their overall medical care between good and excellent. Providers seen in private office settings were rated higher than those seen in a clinic.
South Dakota (1996)
In this study the status of 75 adults who were discharged from a state-operated facility to the community were examined. Of the 75 adults who moved from an institution to a community residence, no one experienced significant health concerns as a result of the move. The weights of many people fluctuated. For those who lost weight, they remained within their ideal weight range. Three people received gastronomy tubes. Six months after the move, there were 18 visits to the emergency room; 15 to the hospital, which lasted a total of 53 days; and 2 visits to the clinic for a broken toe and a broken leg.
Spitalnik and Like (1994)
This study documented the experiences of adult community residents with varying degrees of intellectual disability. Of the 71 participants in this study, there were 371 family practice visits within one year. Of the 550 clinical laboratory tests, 84.7% included blood chemistry tests, hematology tests, automated blood chemistry profiles, urine analyses, and immunology tests. The median number of visits per person was 5. People who were 21 to 44 years old accounted for 81.1% of the visits. The median number of visits for people age 21 to 44 was 5, and for those age 45 to 73, it was 4.5. People with mild intellectual disabilities accounted for 42.9% of the visits: those with moderate intellectual disabilities, 29.1%; and severe/profound, 28%. The median number of visits for individuals with mild intellectual disabilities was 4; for those with moderate intellectual disabilities, 5; and for people with severe/profound intellectual disabilities, 3.
Community Living: Comparison of Health Care Outcomes and Utilization Patterns
Table 3 is a summary of studies in which researchers compared the health care outcomes and utilization patterns of people who resided in institutions and the community. Four compared movers to stayers (Brown & Bretting, 1998; Conroy, Lemanowicz et al., 1991; Conroy, Seiders et al., 1995, 1998). Litzinger, Duval, and Little (1993) and Tyler and Bourguet (1997) compared the health status, health care access, and utilization patterns of a group of individuals at the time they lived in an institution to one year after they moved to the community. Lakin, Anderson, Hill, Bruininks, and Wright (1991), Rimmer, Braddock, and Fujiura (1993), and Rimmer, Braddock, and Marks (1995) compared people who currently lived in an institution to those who lived in some type of community residence. Rimmer, Braddock, and Fujiura (1994) compared people from the general population to those who lived in an institution, an ICF/ MR or with their families (Rimmer, Braddock, & Fujiura, 1994). Although in all of the studies, the investigators indicated that participants had an intellectual disability, in two the researchers did not specify the level of intellectual disability (Brown & Bretting, 1998; Conroy, Lemanowicz et al., 1991). The level of intellectual disability among individuals from the other studies ranged from borderline/ mild to profound. Below are the summaries.
Brown and Bretting (1998)
Few individuals reported that they chose their own doctor in either institutional or community settings. Over time, more community residents saw a doctor they liked. Movers consistently indicated that they saw a doctor when needed. Of the people living in the community, 67% to 74% reported that their doctor always spent enough time with them. People living in both settings indicated that their doctor always helped them. Staff knowledge about the health and medical needs was rated as excellent or acceptable in both settings. A greater percentage of post-move staff members exhibited an excellent level of knowledge.
Conroy, Lemanowicz et al. (1991)
Adults living in institutions and the community indicated that, on average, they had received a general medical examination within the previous 6 months. Movers and stayers were equally in need of health care in 1985 and 1990. There were no changes in medical needs over time for either group. There were also no differences between groups in the average numbers of medications received each day.
Conroy, Seiders et al. (1995)
Respondents who self-identified as the person who knew the subject best were asked, “In general, how is this consumer's health?” Responses ranged from 1 (very poor) to 5 (excellent). The average score for people living in the institution was 3.74 and for their counterparts living in the community, 3.86. The average number of illnesses in the preceding 28 days for stayers and movers was less than one. The average score for general health status in 1995 was three times higher for stayers than movers. Respondents were asked to rate the quality of health care on a 5-point Likert scale (1 = very poor to 5 = excellent). On the average, people living in institutions rated primary physician services (4.13), nursing services (4.19), services during an acute illness (4.47), emergency care (4.38), and in-patient hospital care (4.19) as good. On the average, individuals living in the community typically rated primary physician services (4.00), nursing services (4.17), services during an acute illness (3.94), emergency care (3.76), and in-patient hospital care (3.66) as good or slightly less than good. For stayers, the average number of doctor contacts for acute illness was 2.4 in 1994 and 3.2 in 1995; for normal preventive care, the average number of contacts was 12 in 1994 and 11.5 in 1995; and for specialists the average number was 4.2 in 1994 and 5.2 in 1995. For movers, the average number of doctor contacts for acute illness was 1.3 in 1994 and 1.5 in 1995; for normal preventive care, the average number of contacts was 5.7 in 1994 and 6.3 in 1995; and for specialists the average number was 5 in 1994 and 5.7 in 1995.
In 1995, the average person living in an institution saw a physician 19.9 times and 18.6 times in 1994 compared to 13.5 times in 1995 and 12 times in 1994 for the average individual living in the community. Further examination of these findings indicate that both groups were roughly similar in the frequency with which they saw specialists and physicians for an emergent illness. Both groups were equally likely to be seen by a specialist. However, people living in the institution had more visits for preventive care than did those living in the community. They saw a doctor twice as often as their community counterparts for acute illnesses. The average number of hospital admissions in 1994 and 1995 was less than one for stayers and movers. The average number of emergency room visits in the previous year was also less than one.
Conroy, Seiders et al. (1998)
Nearly 17% of the movers and 34.8% of the stayers had major medical problems. For example, 15.9% of the movers and 12.4% of the stayers had cerebral palsy; 21.2% of the movers and 31.2% of the stayers, seizures; 8.2% of the movers and 12.8% of the stayers, a brain injury; and 13.7% of the movers and 23.3% of the stayers, a physical disability. Respondents were asked to rate the quality of health care on a 5-point Likert scale (1 = very poor to 5 = excellent). The average score of general health for stayers was 3.7 and for movers, 4.1. The average number of days of illness in the preceding 30 days for stayers was 1.2 and for movers, the average number was nearly 1. The average score on “how easy it was to find health care” was 3.7 for movers. The average score for “how good is the health care” for stayers was 4.7 and 4.4 for movers. Over 92% of the movers had a primary physician. The average number of doctor visits in the previous year for stayers was 52.4; 13.5, for movers. The percentage of typical care visits in the past years for stayers was 94.6% and for movers, 97.2%; the percentage of acute visits was 48.5% for stayers and 21.3% for movers. The percentage of stayers and movers who were admitted to a hospital in the previous year was 14.6% and 11.5%, respectively. The average number of hospital admissions in the past year for stayers and movers was less than .50.
Lakin et al. (1991)
In this study the authors compared health conditions and health service use among a nationally representative sample of 370 individuals who were 62 years or older from 235 residential settings. Respondents were facility staff or administrators who had known the individual well for at least 6 months. Lakin et al. found no facility-related differences in the prevalence of high blood pressure, arthritis, and heart disease. The state institution residents had significantly higher prevalence of neurological disorders, respiratory disorders, back problems, and muscle atrophy/contractures than did individuals living in other types of facilities. In the preceding month, 46.1% of the people living in foster care, 52.9% in group homes, 67.8% in large private facilities, and 93.7% in state-operated institutions were visited by a nurse. In the past year, a physician visited 7.1% of the people living in foster care, 7.7% residing in group homes, 9.6% living in large private facilities, and 18.3% residing in state-operated institutions. The number of hospitalizations over the previous year was not significantly different across facilities nor were there significant differences in health-related limitations.
Litzinger et al. (1993)
Investigators in this study compared the health status of a group of adults who lived in an institution to their health status one year out of the institution. Movers were considered to be “medically fragile” and to have “complicated seizure disorders.” Most were on multiple medications, and a few people took barbiturates. The simplification of anticonvulsants, early intervention for seizures, and improved staff education resulted in fewer seizures, a decrease in emergency room visits, and an increased level of functioning.
Rimmer, Braddock, and Fujiura (1993)
Of the 364 people who were in this study, 27.5% of the men and 58.5% of the women were obese. When the type of living arrangement was compared, researchers found that 16.5% of those living in the institutions; 50%, in ICFs/MR; 40.9%, in group homes; and 55.3% living with their family were obese. When level of intellectual disability was compared, 46.5% of the people with mild, 53.2% of those with moderate, and 29.4% of the individuals with severe/profound intellectual disabilities were obese.
Rimmer, Braddock, and Fujiura (1994)
These authors found that adults with mild to severe intellectual disabilities had cardiovascular risk profiles similar to those without intellectual disabilities. However, people living in group homes and natural family settings tended to include higher at risk rates, depending on the risk factor and gender.
Rimmer, Braddock, and Marks (1995)
Rimmer et al. found that people living in institutions had lower body weights than did their counterparts who lived in group homes or in their natural family home. They also had lower body mass indexes (BMIs) and percentage body fat levels compared to those living with their families. In addition, they had lower total cholesterol and low-density lipoprotein cholesterol (LDL-C) levels than did those living in the group home and natural family groups. Moreover, they had lower triglycerides (TG) and a lower ratio of total cholesterol to high-density lipoprotein cholesterol (HDL-C) than did those living with their families. Although the overall use was low across all groups, people living in group homes smoked more, drank more alcohol and coffee, and exercised less than did those living in institutions and with their families.
Tyler and Bourguet (1997)
In the first year following a move from an institution to group homes, each person averaged 6.6 office visits to a family physician. Physicians identified movers with newly diagnosed major health problems (e.g., chronic persistent hepatitis due to hepatitis B, dysphagia, acid peptic disease, gastroesophageal reflux disease, absence seizures, primary degenerative dementia, bronchiectasis, and idiopathic iridocyclitis). In addition, significant changes in pharmacotherapy occurred. For example, anticonvulsants were initially prescribed for 5 people; 2 received triple-drug therapy, 2 received two-drug therapy, and 1 received one-drug therapy. One year later, with no worsening of seizure control, no one required triple-drug therapy, 2 people received two-drug therapy, and 3 individuals received one-drug therapy. Moreover, health maintenance practices included hepatitis B immunization, cholesterol determinations, smoking cessation counseling, and calcium supplementation.
Despite the importance of this topic, there are strikingly few published studies in which researchers directly examined efforts to provide community-based health services to persons with intellectual disabilities. The extant literature indicates that appropriate medical care can be provided, but everyone does not have access to those services. Certainly, our findings indicate a need for more attention to this subject.
Several methodological limitations among the studies limit the conclusions about health status, utilization patterns, and health care outcomes. Some of the reports are unpublished, so their methodological processes have not been subjected to peer review. The majority of the researchers did not utilize matched comparison or control groups. In addition, several investigators conducted either medically related pre–postmeasures or followed participants over a period of time. Moreover, group formation and participant selection also varied across studies. Representativeness of the samples studied and criteria for inclusion in the samples varied. Groups typically constituted naturally assembled collectives. Furthermore, a variety of instruments and informants were employed to obtain medical information, which made comparison across studies difficult. Finally, several researchers utilized interviews or questionnaires that they developed for their particular study. It is not known whether these instruments were tested for psychometric soundness.
The studies contained within this literature review were descriptive and comparative in nature. These types of studies allow readers a brief look at the lives of individuals at one point in time; however, they do not allow identification of factors that influence health-related outcomes nor an examination of what factors operate in combination with one another as broader factors or as multiple predictors in discriminating among groups or persons with different living experiences.
Overall, the descriptive studies indicate that the health of people with intellectual disabilities who move from an institutional setting to the community improved. Further, the medical services received were rated as being either better or unchanged, and access to services improved. In fact, Brown (1998) noted that previously undiagnosed medical conditions were identified in the community. However, Edgerton et al. (1994) found that people living in community residences or with relatives had adequate health care and access to medical services where their counterparts who lived on their own had difficulty with obtaining and accessing services.
The findings from the comparative studies were consistent with those from the descriptive studies. The overall health of institutionalized people and their counterparts who lived in the community was unchanged or improved after leaving institutions. Access to services was considered timely and appropriate. In addition, medical services received were rated as being either better or unchanged. However, as people obtained more personal independence, they tended to have higher “at risk” rates for cardiovascular profiles and for unhealthy life styles.
Consistent with the previous literature review (Hayden & DePaepe, 1991), we found that persons who resided in state institutions utilized health services and professionals more frequently than did those who lived in the community. Whether this is the result of the medical conditions of persons who reside in institutions requiring more frequent medical care and monitoring than those who live in the community, or whether people see health professionals more often because these professionals work on site remains unclear. Researchers have suggested that the higher medical service use by people in institutions may be related to either administrative procedures (Silverman et al., 1984) or the organizational differences within the service delivery models utilized in those facilities (Lakin et al., 1991). However, a conclusive determination of the precise factors that are responsible for this higher service use has not been made at this time.
As noted previously, the findings from this literature review are consistent with those found by Hayden and DePaepe (1991). Findings reflect the fact that the outcome data reported across studies were general and variable; as a result, it was difficult to draw direct conclusions from these noncomparable measures. Yet, there is evidence to indicate that (a) there are individuals with varying degrees of intellectual disability and needs for medical care living in the community, (b) people with significant medical conditions can be placed and maintained in more normalized community settings, and (c) medical supports can be and are being provided to people with intellectual disabilities and allied medical conditions to enable them to live in the community. However, some people had unmet medical needs, and the availability of and access to community-based services were problematic for others. These contradictory findings indicate that it is possible to serve people with intellectual disabilities who have medical problems in the community, but the service delivery system has room for improvement. Until this is completed and improvements are made within the medical service delivery system, it is important for advocates to acknowledge that there are barriers to the provision of medical care and services, address the barriers to the provision of community medical care and services, determine what services are needed, and develop strategies and assurances that quality medical care is available in the community.
The task for human service administrators and advocates in light of the Olmstead decision is to plan, coordinate, and monitor comprehensive medical services to individuals with intellectual disabilities, regardless of where they live. In relation to the community medical service system, advocates (particularly those with disabilities), health providers, service administrators, and researchers need to work together to determine (a) the relationship between the type of community living setting and the quality of health care received and access to health care, (b) how to improve health professionals' abilities to explain to people with intellectual disabilities medical terminology, (c) how to provide a medical history to people with intellectual disabilities that they can share with their doctors, and (d) methods that will aid people with intellectual disabilities to understand written instructions and recall doctors' instructions. Second, professionals should evaluate the person's medical needs and develop a comprehensive plan that will meet the individual's requirements in the community. Third, states need to coordinate services within and across agencies and professionals for cost-containment purposes and to increase the dissemination of information. Fourth, state mental retardation/developmental disabilities agencies need to develop a monitoring system as a necessary component to assess the quality of medical services provided and to identify any unmet medical service needs. Fifth, medical personnel need to be provided with more incentives to participate in the Medicaid program.
In conclusion, findings are consistent with the statement made by Crocker in 1992:
Our ability in current times to provide accurate health care for adults with mental retardation is improved but incomplete. Taken as a class, these persons are obviously of diverse personal and clinical background, and generalizations should be approached cautiously. For the majority, the medical needs can be expected to approximate those of average persons, although influences may occur because of altered personal independence and self-care practices and from particular past experiences and supports. Others have special vulnerabilities deserving preventive and therapeutic assistance. (p. 165)
NOTE:This study was conducted while the first author was affiliated with the Institute on Community Integration, University of Minnesota. It was supported by Cooperative Agreements H133B80048 and H133B980047 from the U. S. Department of Education, National Institute on Disability and Rehabilitation Research (NIDRR). The contents and opinions expressed herein do not necessarily reflect the position or policy of the U. S. Department of Education, and no official endorsement should be inferred.
Authors: Mary F. Hayden, PhD, President, The LBH Institute, 58 Inner Drive, St. Paul, MN 55115. Shannon H. Kim, PhD (firstname.lastname@example.org), Director of Education and Research, Department of Education and Research, Baddour Center, 3297 Hwy 51 S., PO Box 97, Senatobia, MS 38668. Paris DePaepe, PhD, Associate Professor, Southwest Missouri State University, School of Teacher Education, 901 S. National Ave., Springfield, MO 65804