Access to care among disabled adults on Medicaid.

INTRODUCTION

Disabled individuals account for about one-sixth of the Medicaid Medicaid, national health insurance program in the United States for low-income persons; established in 1965 with passage of the Social Security Amendments and now run by the Centers for Medicare and Medicaid Services. caseload caseload n. The number of cases handled in a given period, as by an attorney or by a clinic or social services agency.

caseload Noun but more than one-third of program expenditures (Kaiser Commission on Medicaid and the Uninsured, 2001). Yet, little is known about the health needs of disabled Medicaid beneficiaries and their experiences under the Medicaid Program (Davis and O'Brien O'Brien , Edna Born 1932. Irish writer whose works, including The Lonely Girl (1962) and Johnny I Hardly Knew You (1977), explore the lives of women in modern-day Ireland. Noun 1. 1906; Hagglund et al., 1999; Meyer and Zeller, 1999; Hill and Wooldridge 2000; Center for Health Care Strategies Inc., 2000; Shalala, 2000). State administrative data provide little or no information on a beneficiary's disabling disable tr.v. disabled, disabling, disables 1. To deprive of capability or effectiveness, especially to impair the physical abilities of. 2. Law To render legally disqualified. condition, health care needs, and barriers to care. Surveys of the disabled Medicaid population can provide more indepth information on how the disabled are faring, however, such surveys are rare. Until very recently, disabled Medicaid enrollees have not been the central subject of a major survey.

With State's growing efforts to move disabled Medicaid beneficiaries into managed care, interest in better understanding the needs and experiences of those individuals has escalated. Accordingly,

CMS (1) See content management system and color management system. (2) (Conversational Monitor System) Software that provides interactive communications for IBM's VM operating system. recently funded a survey that focuses on the health and health care experiences of disabled Medicaid beneficiaries in New York City New York City: see New York, city. New York City City (pop., 2000: 8,008,278), southeastern New York, at the mouth of the Hudson River. The largest city in the U.S. . New York New York, state, United States New York, Middle Atlantic state of the United States. It is bordered by Vermont, Massachusetts, Connecticut, and the Atlantic Ocean (E), New Jersey and Pennsylvania (S), Lakes Erie and Ontario and the Canadian province of was selected for the study because of plans by the State to implement mandatory capitated managed care for disabled Medicaid beneficiaries in the future. Thus, in addition to providing important new information about the experiences of disabled Medicaid beneficiaries, the survey provides a baseline The horizontal line to which the bottoms of lowercase characters (without descenders) are aligned. See typeface. baseline - released version for a future evaluation of the impacts of the shift to mandatory managed care on disabled beneficiaries. In this article, we use that survey data to explore differences in access to and use of care among key subgroups of the disabled Medicaid population--adults with physical disabilities, mental illness, and MR/DD MR/DD Mental Retardation and Other Developmental Disability . We address three related questions:

* Does access and use under Medicaid vary for individuals with physical disabilities, mental illness, and MR/DD?

* Can the differences in their health care experiences be explained by their differing health care needs or, alternatively, are there persistent differences in access to care under Medicaid for some groups of disabled persons?

* Beyond disabling condition, what other characteristics of the disabled population (e.g., health status, functional limitations)

predict greater difficulties with accessing care under the Medicaid Program?

We focus on the health care experiences of non-aged adults who are eligible for Medicaid by virtue of their receipt of Supplemental Security Income Supplemental Security Income A Social Security program established to help the blind, disabled, and poor. (SSI (1) See serverside include and single-system image. (2) (Small-Scale Integration) Less than 100 transistors on a chip. See MSI, LSI, VLSI and ULSI. 1. (electronics) SSI - small scale integration. 2. ), the Federal program that provides cash assistance to needy needy adj. needier, neediest 1. Being in need; impoverished. See Synonyms at poor. 2. Wanting or needing affection, attention, or reassurance, especially to an excessive degree. age, blind, and disabled individuals. To qualify for SSI on the basis of disability, an individual must be severely disabled, such that he or she is "... unable to engage in any substantial gainful gainful adj. Providing a gain; profitable: gainful employment.

gainfully adv. activity by reason of a medically determined physical or mental impairment Impairment 1. A reduction in a company's stated capital. 2. The total capital that is less than the par value of the company's capital stock. Notes: 1. This is usually reduced because of poorly estimated losses or gains. 2. expected to result in death or that has lasted, or can be expected to last, for a continuous period of at least 12 months" (U.S. House of Representatives, 2000).

By broadening our knowledge of the disabled population, we can better address the gaps in the current health care system, including identifying areas in which there may be opportunities for more effective and efficient delivery of care for key population subgroups. Further, this information will help States and managed care organizations in developing managed care programs that better meet the varied needs of vulnerable Medicaid beneficiaries.

DATA AND METHODS

Data

We rely on a telephone survey of 816 disabled adult SSI beneficiaries fielded in New York City in 1999-2000. A comparable survey was also fielded in Westchester County, New York. Because the findings were broadly similar in both New York City and Westchester County, for simplicity in presentation we have limited this article to New York City. However, the consistency of the findings for New York City and Westchester County provides some support for the generalizability of these findings beyond New York City.

At the time of the survey, approximately 10 percent of the sample of disabled beneficiaries was already voluntarily enrolled in Medicaid managed care. (1) Most were individuals who had entered Medicaid managed care while enrolled in the Temporary Assistance for Needy Families Temporary Assistance for Needy Families (TANF, often pronounced "TAN-if") is the July 1, 1997, successor to the Aid to Families with Dependent Children program, providing cash assistance to indigent American families with dependent children through the United States Department of (TANF TANF Temporary Assistance for Needy Families (previously known as AFDC) ) Program and chose to continue in managed care after their eligibility for SSI was established.

The sample for the survey was identified through State enrollment records for the Medicaid Program. Since information on disabling conditions is not available through State program records, we matched

with Social Security Administration records for the SSI Program to obtain information on the primary disabling condition. Our study focuses on non-aged adult SSI beneficiaries living in the community. We also limited the study sample to SSI beneficiaries who were to be included in the future switch to mandatory Medicaid managed care. Thus, we excluded from our sample Medicare Medicare, national health insurance program in the United States for persons aged 65 and over and the disabled. It was established in 1965 with passage of the Social Security Amendments and is now run by the Centers for Medicare and Medicaid Services. recipients, individuals receiving long-term care services under Medicaid waiver The voluntary surrender of a known right; conduct supporting an inference that a particular right has been relinquished. The term waiver is used in many legal contexts. programs, and the homeless. We also limited the study to those on Medicaid for the entire past year to ensure consistency between the outcome measures describing health care use and the period of Medicaid enrollment. (2) In selecting the survey sample, we stratified stratified /stratified/ (strati-fid) formed or arranged in layers. stratified adj. Arranged in the form of layers or strata. on the basis of disabling condition. Random samples were selected within each strata.

The survey collected information on access to and use of care, along with socioeconomic, health status, and disability information. Information was sought directly from the Medicaid beneficiary beneficiary Person or entity (e.g., a charity or estate) that receives a benefit from something (e.g., a trust, lifeinsurance policy, or contract). A primary beneficiary receives proceeds from a trust or insurance policy before any other. whenever possible. However, there were instances in which the sample member was not able to complete the survey. Approximately 18 percent of the sample members relied on a proxy respondent In Equity practice, the party who answers a bill or other proceeding in equity. The party against whom an appeal or motion, an application for a court order, is instituted and who is required to answer in order to protect his or her interests. , including 37 percent of sample members with MR/DD, 15 percent of those with mental illness, and 13 percent of those with physical disabilities. The two most common reasons for using a proxy were language issues and the beneficiary being mentally incapable of responding to the survey. Because of the

possibility that responses provided by a proxy differ from those that would have been provided by the sample member if he or she were able to respond to the survey, we control for proxy respondents In the context of marketing research, a representative sample drawn from a larger population of people from whom information is collected and used to develop or confirm marketing strategy. in the multivariate analysis. However, care must be taken in interpreting that control variable since the presence of a proxy respondent may also capture severity of disability and/or language barriers to care. (3)

The overall response rate for the survey was 56 percent. Almost all of the non-response was due to an inability to locate sample members rather than a refusal by those who were located to participate in the survey. (4) Once a sample member was located, the cooperation rate was 94 percent. Survey weights were developed to reflect the probability of selecting each individual for the survey and to adjust for survey non-response. The adjustments for non-response were based on the administrative data available for both respondents and non-respondents, which included basic demographic information along with primary disabling condition and geographic location. The analyses reported here have been weighted using these sample weights.

Missing data were a relatively minor problem for the explanatory explanatory adj. Serving or intended to explain: an explanatory paragraph.

explan variables included in our regression analysis In statistics, a mathematical method of modeling the relationships among three or more variables. It is used to predict the value of one variable given the values of the others. For example, a model might estimate sales based on age and gender. : less than 3 percent of the individuals had missing values In statistics, missing values are a common occurrence. Several statistical methods have been developed to deal with this problem. Missing values mean that no data value is stored for the variable in the current observation. . We used hot-deck imputation IMPUTATION. The judgment by which we declare that an agent is the cause of his free action, or of the result of it, whether good or ill. Wolff, Sec. 3. procedures to assign values for individuals with missing values for the explanatory variables.

Measures of Health Care Access and Use--We focus on key aspects of access to care as presented in a standard analytic analytic or analytical adj. 1. Of or relating to analysis or analytics. 2. Expert in or using analysis, especially one who thinks in a logical manner. 3. Psychoanalytic. framework (Andersen 1968, 1995; Andersen and Aday 1978; Andersen, McCutcheon The name McCutcheon or MacCutcheon may refer to: People Malcolm Wallace McCutcheon (1906-1969), a Canadian politician Bill McCutcheon (1924-2002), American actor John T. McCutcheon (1870-1949), American political cartoonist Martine McCutcheon (b. , and Arday, 1983). We consider potential access and realized access. In this study, potential access is measured as the presence of a usual source of care and unmet unmet adj. Not satisfied or fulfilled: unmet demands. need. Realized access is measured by the actual use of health care services, including visits to the emergency room (ER), hospital stays, outpatient outpatient /outpatient/ (-pa-shent) a patient who comes to the hospital, clinic, or dispensary for diagnosis and/or treatment but does not occupy a bed. outpatient n. visits for physical and mental health care, and receipt of three preventative health care services--a dental care visit, an immunization immunization: see immunity; vaccination. against influenza influenza or flu, acute, highly contagious disease caused by a virus; formerly known as the grippe. There are three types of the virus, designated A, B, and C, but only types A and B cause more serious contagious infections. , and, for females, a Pap smear Pap smear or Papanicolaou smear Sample of cells from the vagina and cervix of the uterus for laboratory staining and examination to detect genital herpes and early-stage cancer, especially of the cervix. Developed by the Greekborn U.S. . Higher levels of hospital and ER use indicate potential access problems if that use stems from problems obtaining care in other settings. Since we cannot identify avoidable hospitalizations or inappropriate ER use from the survey, we interpret higher levels of hospital and ER use among the disabled Medicaid beneficiaries as suggestive of suggestive of Decision making adjective Referring to a pattern by LM or imaging, that the interpreter associates with a particularusually

malignant lesion. See Aunt Millie approach, Defensive medicine. problems with access to primary care, particularly when combined with high levels of unmet need and difficulties obtaining care.

Finally, we consider the disabled individuals' assessment of their ease of access to care. Specifically, we asked the survey respondents to rate various aspects of their health care as excellent, very good, good, fair, or poor. We consider their rating of the ease of finding a doctor who will accept Medicaid and the ease of getting specialist, mental health, and emergency care.

Methods

We conduct both descriptive and multivariate analyses. In the descriptive analyses, we compare individuals with mental illness and MR/DD to those with physical disabilities. This comparison allows us to identify differences in access to and use of health care among the three subgroups.

The multivariate analysis has two objectives: (1) to determine whether the differences in health care experiences among the three subgroups can be explained by differences in their personal characteristics and health care needs, and (2) to identify characteristics of the disabled Medicaid population that are associated with greater difficulties in obtaining care. In addressing these issues, we estimate multivariate models of access and use as a function of the primary disabling condition of the individual--mental illness, MR/DD, or physical disability--and his or her demographic, health, and disability characteristics. The variables included in the multivariate analysis reflect the predisposition predisposition /predisposition/ (-dis-po-zishun) a latent susceptibility to disease that may be activated under certain conditions. predisposition n. 1. of an individual to use services, factors that enable or impede impede tr.v. impeded, impeding, impedes

To retard or obstruct the progress of. See Synonyms at hinder1.

[Latin imped use, and the individual's need for services (Anderson Anderson, river, Canada Anderson, river, c.465 mi (750 km) long, rising in several lakes in N central Northwest Territories, Canada. It meanders north and west before receiving the Carnwath River and flowing north to Liverpool Bay, an arm of the Arctic , 1968). In addition to those measures, we also control for whether the survey responses were obtained from a proxy respondent for the sample member. Since all of the outcome measures are binary Meaning two. The principle behind digital computers. All input to the computer is converted into binary numbers made up of the two digits 0 and 1 (bits). For example, when you press the "A" key on your keyboard, the keyboard circuit generates and transfers the number 01000001 to the variables, we estimate logit The logit function is an important part of logistic regression: for more information, please see that article. In mathematics, especially as applied in statistics, the logit regression regression, in psychology: see defense mechanism. regression In statistics, a process for determining a line or curve that best represents the general trend of a data set. models.

Results

Overview of the Sample

Health and Disability Status--Although our sample of SSI beneficiaries are all disabled, there is a great deal of variation in their health status and dependency dependency In international relations, a weak state dominated by or under the jurisdiction of a more powerful state but not formally annexed by it. Examples include American Samoa (U.S.) and Greenland (Denmark). that is reported both within and across the subgroups (Table 1). Among individuals with physical disabilities, two-thirds report that they are in fair or poor health (versus good, very good, or excellent), and almost 75 percent report needing help with activities of daily living (ADLs) i.e., bathing,

dressing, eating, transferring, using the toilet, or getting around the home and/or instrumental activities of daily living instrumental activities of daily living A series of life functions necessary for maintaining a person's immediate environmenteg, obtaining food, cooking, laundering, housecleaning, managing one's medications, phone use; IADL measures a (IADLs) i.e., meal preparation, shopping, finances, housework, using the telephone, or managing medications. Of particular importance to their ability to access health care, 36 percent reported needing assistance getting around their home (i.e., mobility limitations) and 13 percent reported needing assistance using the telephone.

Compared with the physically disabled, individuals with MR/DD tend to be significantly healthier--almost two-thirds were in good, very good, or excellent health. However, those with MR/DD are significantly more likely than the physically disabled to need help with their daily activities. In general, as might be expected given the nature of their primary disability, individuals with MR/DD require less assistance with AD Ls and more assistance with IADLs than the physically disabled. Specifically, we find that MR/DD beneficiaries are less likely to have mobility limitations, but more likely to require assistance with meal preparation, shopping, finances, using the telephone, and managing their medications.

In contrast to those with MR/DD, individuals with mental illness report similar levels of health and disability status as those with physical disabilities. Like the physically disabled, about two-thirds of the mentally ill report their health as fair or poor and about 70 percent report needing assistance with one or more ADLs or IADLs. However, the patterns of dependency reported by the two subgroups differ: individuals with mental illness are significantly less likely to need help with bathing, using the toilet, or getting around their home, but more likely to need help managing their medications.

Demographic and Socioeconomic Characteristics--Beyond the health and disability-related challenges to obtaining care, many in the subgroups of SSI beneficiaries face other challenges. For example, many have limited formal education, potential language barriers, and limited financial resources (Table 2). Further, most are from racial and ethnic

minorities and, thus, may have difficulties obtaining culturally sensitive care (Mayberry et al., 1999). Among the physically disabled, less than one-half have graduated from high school or speak English 1. English - (Obsolete) The source code for a program, which may be in any language, as opposed to the linkable or executable binary produced from it by a compiler. The idea behind the term is that to a real hacker, a program written in his favourite programming language is as their first language. About 80 percent are Hispanic Hispanic Multiculture A person of Mexican, Puerto Rican, Cuban, Central or South American, or other Spanish culture or origin, regardless of race Social medicine Any of 17 major Latino subcultures, concentrated in California, Texas, Chicago, Miam, NY, and elsewhere or black persons and live in families with an annual income of less than $10,000. The situation is similar for those with mental illness, although they are more likely to be white persons than the physically disabled (33 versus 19 percent).

In contrast, the characteristics of those with MR/DD are significantly different than the physically disabled: individuals with MR/DD tend to be younger and are less likely to have graduated from high school (25 versus 44 percent). However, individuals with MR/DD may tend to face fewer language barriers as they are much more likely to speak English as their first language (69 versus 47 percent) than those with physical disabilities. Individuals with MR/DD also tend to have greater family and financial resources than the physically disabled: They are more likely to live with others, especially parents, and to have higher family incomes. Nonetheless, about 65 percent have family income of less than $10,000 per year.

As might be expected given the differences between the overall population in New York City and the population of the Nation as a whole, the Medicaid population in New York City differs from that in the rest of the Nation. (5) New York City SSI beneficiaries are older (65.9 percent are over age 40, compared with 56.5 percent nationwide), less well educated (40.6 percent have graduated from high school, compared with 59.1 percent nationwide), and less likely to be white persons (22.9 percent compared with 62.4 percent). Further, SSI beneficiaries in New York City are much poorer than SSI beneficiaries nationwide: 77.3 percent report incomes less than $10,000 per year, compared with 41.0 percent for the overall SSI population.

Access to Care--Given the challenges faced by the disabled as they seek to obtain care, a key element in their access to care is having a usual source of care (other than the ER). As shown in Table 3, we find evidence that the Medicaid Program in New York City is effective at connecting disabled Medicaid beneficiaries, particularly for those with physical disabilities, to health care providers. Nearly every disabled individual has a usual source of care for physical health. However, somewhat fewer of those with MR/DD and mental illness report a usual source of care for physical health (92 and 89 percent respectively), as compared with those with physical disabilities (97 percent).

As expected, individuals with mental illness are significantly more likely than those with physical disabilities to have a usual source of care for mental health. Nevertheless, about one-quarter of individuals who are on SSI because of mental illness do not have a usual source of mental health care.

Beyond having a usual source of care, there is evidence that members of all three subgroups face similar difficulties in accessing care. About 70 percent of all three subgroups report a wait in the office to see their provider of more than 30 minutes, about 40 percent report a travel time to their provider of more than 30 minutes, and about 20 percent report difficulty communicating with their provider because of language problems. While comparable measures for other populations are not available for all the measures included in this survey, the travel and wait times reported here are much higher than national estimates for the general Medicaid and uninsured populations (Cornelius Cornelius, in the New Testament, centurion of an Italian cohort stationed at Caesarea, one of the first Gentile converts and traditionally first bishop of Caesarea. Cornelius Roman centurion baptized by Peter. [N.T.: Acts 10, 11] See : Baptism , Beaureguard, and Cohen cohen or kohen (Hebrew: priest) Jewish priest descended from Zadok (a descendant of Aaron), priest at the First

Temple of Jerusalem. The biblical priesthood was hereditary and male. , 1991).

Health Care Use--Consistent with the high share of Medicaid expenditures accounted for by disabled beneficiaries, we find that SSI beneficiaries are frequent users of health care services, including high cost services (i.e., inpatient inpatient /inpatient/ (inpa-shent) a patient who comes to a hospital or other health care facility for diagnosis or treatment that requires an overnight stay. inpatient n. and ER care). Almost one-third of the physically disabled and one-quarter of the mentally ill reported a hospital stay in the past year, with many reporting more than one stay. Similarly, more than one-half of those with physical disabilities and nearly one-half of those with mental illness reported an ER visit. Moreover, more than one-half of those individuals reported multiple ER visits over the past year. As expected, given their better health status, hospital stays and ER visits were less common for individuals with MR/DD; however, they were still substantial users--15 percent reported a hospital stay and 39 percent an ER visit in the last year. (To place these figures in context, among adults nationally, 7 percent report a hospital stay and 21 percent an ER visit over a year) (Coughlin Coughlin is a surname, and may refer to: Bill Coughlin Charles Coughlin Con Coughlin Daniel Coughlin Jack Coughlin John Coughlin John Coughlin (footballer) , Long, and Kendall Kendall , Edward Calvin 1886-1972. American biochemist. He shared a 1950 Nobel Prize for discoveries concerning the hormones of the adrenal cortex. , forthcoming).

Not surprisingly, individuals with mental illness were significantly more likely than the physically disabled to have hospital stays and ER visits related to their mental health. Hospital stays associated with mental health were also more common for those with MR/DD.

As one would hope for a disabled population, nearly everyone (90 to 96 percent) in all three subgroups of SSI beneficiaries reported some type of outpatient visit for physical or mental health in the past year. However, although the differences are not great, significantly fewer of

those with mental illness and MR/DD reported an outpatient visit for physical health care than did the physically disabled (89 and 87 percent, respectively, versus 95 percent). Thus, about 1 in 10 of both those with mental illness and those with MR/DD did not have a visit for their physical health in the past year.

Of greater concern, only 75 percent of those on SSI because of mental illness had an outpatient visit for mental health care over the past year. No doubt this reflects the finding reported earlier that only 75 percent of those with mental illness have a usual source of care for mental health.

As a doctor visit is often required to receive preventative care, the lack of outpatient visits for physical health for about 10 percent of those with mental illness and MR/DD raise concerns about access to preventative care for those individuals. Direct measures of access to specific types of preventative care for those who had a health care visit adds to those concerns about access to preventative care. We find evidence that sizable sizable also sizeable adj. Of considerable size; fairly large.

sizableness n. minorities of SSI beneficiaries across the three subgroups are not receiving basic preventative care--an annual dental visit, a flu shot (recommended for the aged and disabled) and, for females, a Pap smear. About one-third of the physically disabled did not receive dental care over the past year, about 60 percent did not receive a flu shot, and, among females, almost 25 percent did not receive a Pap smear. Similar levels are reported for the mentally ill, while those with MR/DD do better on some measures and worse on others. The MR/DD subgroup subgroup n. 1. A distinct group within a group; a subdivision of a group. 2. A subordinate group. 3. Mathematics A group that is a subset of a group.

tr.v. is significantly more likely than the physically disabled to have had a dental visit, but less likely to have had a flu shot and, among females, less likely to have received a Pap smear.

Unmet Need--Despite having a usual source of care and using high levels of health care services, many SSI beneficiaries reported that they did not get care that they felt they needed. Unmet need is of particular concern for this population as it may indicate a health problem that is not being addressed, which may result in poor health outcomes for the individual and high costs to the health care system.

About one-third of the physically disabled report not getting care that was needed for one or more types of care. The pattern of unmet need reported by those with MR/DD was similar to that of the physically disabled. In contrast, significantly higher levels of unmet need were reported by those with mental illness. Nearly one-half of the beneficiaries with mental illness reported unmet need for one or more types of care, including 18 percent reporting unmet need for doctor care, 17 percent reporting unmet need for prescription drugs, and 11 percent reporting unmet need for mental health care. In short, individuals with mental illness appear to have greater difficulty navigating (networking, hypertext) navigating - Finding your way around. Often used of the Internet, particularly the World-Wide Web. A browser is a tool for navigating hypertext documents. both the physical and mental health care delivery systems.

Ease of Obtaining Care--Finally, substantial shares of SSI beneficiaries across the three subgroups rated their ability to access care as fair or poor. About 30 per cent of all three groups rate the ease of finding a doctor who accepts Medicaid as fair or poor. Between 20 and 40 percent report the ease of getting specialist medical care, mental health care, or emergency care as fair or poor.

Multivariate Analysis

The differences in access and use among individuals with physical disabilities, mental illness, and MR/DD may reflect systematic differences in access to care for individuals with different disabling conditions. Alternatively, the differences may reflect differing health care needs of the individuals within the subgroups. Using a regression framework, Table 4 explores the extent to which the differences in health care experiences by those with physical disabilities, mental illness, and MR/DD reflect personal characteristics and health care needs, as measured by demographic characteristics, health status, and ADL and IADL IADL Instrumental activities of daily living, see there dependencies. As in the descriptive analysis, we compare individuals with mental illness and MR/DD to those with physical disabilities. For ease of comparison across outcomes, we report the results from the logit models as odds ratios. The F-test provides an assessment of the overall explanatory power of the models.

As shown in Table 4, a number of the differences in access and use found in the descriptive analysis are no longer significant after controlling for demographic characteristics and health care needs. Most notably, individuals with MR/DD are no longer significantly less likely to have a usual source of care for physical health nor an outpatient visit for physical health than the physically disabled. Likewise those with mental illness are no longer less likely to have an outpatient visit for physical health.

Nevertheless, some differences do persist after controlling for health needs. This suggests that the underlying cause of the individual's disability plays a role in his or her access to care under Medicaid. For example, after controlling for health needs, individuals with mental illness continue to be less likely than the physically disabled to have a usual source of care for physical health and more likely to report unmet need overall and unmet need for doctor care and mental health care. Similarly, individuals with MR/DD remain less likely than those with physical disabilities to have either hospital stays or ER visits. Both those with mental illness and those with MR/DD also continue to be more likely than the physically disabled to have a usual source of care for mental health and to have an outpatient visit for mental health. (However, this may reflect our inability to control for mental health needs in the full sample; our

measures of health and disability status do not include an assessment of mental health.) Overall, these findings suggest greater difficulty in obtaining care for those with mental illness and somewhat better access to care for those with MR/DD, as compared with physically disabled individuals with similar health status and disability levels.

Beyond their disabling condition, other aspects of the individual's health and disability status (e.g., health status, functional limitations) have only limited effect on the ability to obtain care. However, there are some areas of concern. Most notably, individuals with mobility impairments and those in fair or poor health appear to face greater barriers to care. Perhaps in conjunction with that, we also find that these individuals are more likely to use high cost inpatient and ER care. Specifically, those with mobility limitations are significantly more likely than those without such limitations to report unmet need and to rate the ease of getting care as fair or poor. They are also more likely to have multiple hospital stays and ER visits. Similarly, individuals in fair or poor health are more likely than those in better health to rate the ease of getting care as fair or poor and to report unmet need. They also are more likely to have hospital stays and multiple ER visits.

While the higher levels of use by both those with mobility impairments and those in fair or poor health may reflect their greater health care needs, their assessment of the ease of obtaining care and their use of multiple ER visits raises the possibility that some of the high cost service use could be avoided by improving access to primary and preventative care: Individuals in fair or poor health and those with mobility limitations are no more likely to have a usual source of care for physical health, outpatient visits for physical health, or to receive preventative care than are those who report better health and less disability.

DISCUSSION

This article uses newly available survey data to provide an indepth look at disabled adult Medicaid beneficiaries with physical

disabilities, mental illness, and MR/DD. To our knowledge this is the first such detailed examination of the health care needs and experiences of these vulnerable Medicaid beneficiaries. Although the study is limited to a single city in a single State and thus, may not be generalized generalized adj. 1. Involving an entire organ, as when an epileptic seizure involves all parts of the brain. 2. Not specifically adapted to a particular environment or function; not specialized. 3. to other areas, it provides a more extensive look at this population of vulnerable Medicaid beneficiaries than has been possible with existing data sources. Further, because New York has a longstanding Adj. 1. longstanding having existed for a long time; "a longstanding friendship"; "the longstanding conflict" long - primarily temporal sense; being or indicating a relatively great or greater than average duration or passage of time or a duration as specified; tradition of funding one of the Nation's most comprehensive Medicaid Programs, our study provides insights into the circumstances CIRCUMSTANCES, evidence. The particulars which accompany a fact. 2. The facts proved are either possible or impossible, ordinary and probable, or extraordinary and improbable, recent or ancient; they may have happened near us, or afar off; they are public or of individuals on Medicaid in a State with a comparatively well-funded Medicaid Program. While the findings for New York City and Westchester County are suggestive of problems under the Medicaid Program for disabled beneficiaries beyond New York, studies in other locations are needed to assess the extent to which the challenges faced by disabled Medicaid beneficiaries in New York City differ from those faced by disabled beneficiaries in other settings and under other, less comprehensive Medicaid Programs.

As would be expected given the variation in the disabling conditions among disabled Medicaid beneficiaries, we do find differences in health care needs across the three subgroups. For example, two-thirds of those with physical disabilities and mental illness rate their health as fair or poor, and 70 percent report needing assistance with daily activities. However, individuals with physical disabilities are significantly more likely to need help with ADLs (especially help with bathing, toileting, and getting around their home), while those with mental illness are more likely require assistance with IADLs (especially

help with medications). Individuals with MR/DD tend to be healthier than members of the other two subgroups--only about one-third are in fair or poor health; however, 85 percent need help with one or more activities of daily life (especially IADLs).

Despite the differences in their health care needs, we find many similarities in health care use across the three subgroups, including frequent use of high-cost care, limited use of preventative care, and high levels of unmet need. For example, about one-half of those with physical dis. abilities and mental illness had an ER visit in the past year, as did almost 40 percent of those with MR/DD. Further, about one-quarter of the members of all three subgroups had multiple ER visits. Unmet need was reported by nearly one-half of those with mental illness, one-third of the physically disabled, and one-quarter of those with MR/DD.

Although there are many similarities in their health care experiences under Medicaid, there is also evidence that some disabled individuals experience greater barriers in their efforts to obtain care. In particular, the underlying cause of an individual's disability appears to play a key role in his or her access to care under Medicaid, with individuals with mental illness facing greater difficulties obtaining care than the physically disabled after controlling for health care needs. Of special concern, one-quarter of individuals with mental illness did not have usual source of care for mental illness and only 75 percent had an outpatient visit for mental health over the past year.

Traditionally, the mental health care system under Medicaid in New York, as in most States, has relied heavily on inpatient and institutional care. While the State is now investing in more community-based mental health care, the lack of available services and the fragmented fragment n. 1. A small part broken off or detached. 2. An incomplete or isolated portion; a bit: overheard fragments of their conversation; extant fragments of an old manuscript.

3. and episodic episodic sporadic; occurring in episodes. e. falling a paroxymal disorder described in Cavalier King Charles spaniels in which affected dogs, starting at an early age, experience episodes of extensor rigidity, possibly brought on by stress. e. nature of the system of community-based providers has made getting such care difficult (New York State Office of Mental Health, 2001). As a result, it is likely that the access problems faced by those with mental illness in New York City reflect the complexity of securing mental health care under the Medicaid Program in the city. Overlaying overlay 1 tr.v. overlaid , overlaying, overlays 1. To lay or spread over or on. 2. a. these structural barriers, persons with mental illness, because of their health condition, may also have greater difficulty navigating any health care system.

Beyond disabling condition, we also find that individuals with mobility limitations and those in fair or poor health face greater barriers to care. Perhaps because of that, they are more likely to use high cost hospital and ER care than individuals without those limitations.

The challenges faced by disabled individuals in New York City as they seek care under the existing Medicaid Program reflect both systemwide problems and difficulties associated with specific health or disability limitations (such as mental illness, poor health, and mobility limitations). Problems with the health care system that affect all disabled beneficiaries include too few doctors willing to accept Medicaid patients and a lack of emphasis on preventative care. To address these access issues, there is a need for changes in the health care system that is in place under Medicaid (e.g., inducing more doctors to serve Medicaid patients, increasing the emphasis on preventative care) as well as improvements in the assistance provided to specific disabled individuals. The latter would include providing transportation services to physician visits for those with mobility limitations and providing case managers for individuals in fair or poor health and individuals with mental illness to help them navigate (1) "Surfing the Web." To move from page to

page on the Web. (2) To move through the menu structure in a software application. the system and to ensure they receive the care that is needed. New York policymakers have acknowledged the special challenges faced by persons with mental illness and have made case management support for individuals with mental illness is a key component of its mental health system (New York State Office of Mental Health, 2001).

As policymakers in New York and other States introduce managed care to disabled Medicaid beneficiaries, it is important that they bear in mind the diversity of needs and circumstances of Medicaid beneficiaries who have disabilities as well as the range of access problems they currently face under the Medicaid Program. A managed care program that provides a strong home for medical and mental health care, care coordination, transportation services, and a focus on preventive care Preventive care is a set of measures taken in advance of symptoms to prevent illness or injury. This type of care is best exemplified by routine physical examinations and immunizations. The emphasis is on preventing illnesses before they occur. See also Public health could go a long way toward addressing the gaps in coverage that exist under the Medicaid Program for disabled beneficiaries in New York City. Whether it is possible to improve access to care for disabled Medicaid beneficiaries while reducing Medicaid costs will depend on whether the costs of providing the increased services and addressing the unmet need that exists among the disabled population is offset by savings generated from reducing avoidable ER visits and hospital stays.

Table 1 Health and Disability Status of Adult SSI Recipients in New York City, by Disabling Condition: 1999-2000 Primary Disabling Condition Characteristic Total Mental Sample Illness 816 236

Sample Size

Health Status Very Good/Excellent Good Fair/Poor Needs Assistance Neither ADLs or IADLs IADLs Only 1 to 2 ADLs 3 or More ADLs Needs Assistance with ADLs Bathing Dressing Eating Transfering Toileting Getting Around Home

Percent 14.5 11.6 23.5 23.1 61.9 65.3

25.3 28.8 31.4 ** 33.8 23.2 22.2 20.0 ** 15.1

30.1 * 23.2 20.0 16.2 6.4 6.8 17.3 16.3 14.1 * 8.7 27.4 * 19.7

Needs Assistance with or Does Not Do IADLs Meal Preparation 42.0 37.1 Shopping 57.1 51.0 Finances 37.2 35.3 Telephone 16.5 14.3 Housework 39.3 35.1 Medications 29.4 ** 29.0 Primary Disabling Condition Characteristic MR/DD Physical Disability 285 295

Sample Size Health Status Very Good/Excellent Good Fair/Poor

Percent * 31.7 11.0 * 31.7 21.1 * 36.6 67.8

Needs Assistance Neither ADLs or IADLs IADLs Only 1 to 2 ADLs 3 or More ADLs Needs Assistance with ADLs Bathing Dressing Eating Transfering Toileting Getting Around Home

* 14.8 26.2 * 43.6 25.6 22.6 24.2 19.0 24.0

33.5 34.1 ** 28.4 19.9 7.9 5.6 * 11.6 19.9 17.3 17.1 * 17.5 36.4

Needs Assistance with or Does Not Do IADLs Meal Preparation * 57.2 40.6 Shopping ** 66.7 58.3 Finances * 68.1 28.4 Telephone * 34.1 12.2 Housework 42.6 41.4 Medications * 59.3 19.7 * Significantly different from individuals with a physical disability at the 0.01 level. ** Significantly different from individuals with a physical disability at the 0.05 level. NOTES: SSI is Supplementary Security Income. MR/DD is mental retardation/development disabilities. ADLs are activities of daily living. IADLs are instrumental activities of daily living. SOURCE: New York Survey of Working-Age Disabled Medicaid Recipients, 1999-2000. Table 2 Demographic and Socioenomic Characteristics of Adult SSI Recipients in New York City, by Disabling Condition: 1999-2000 Primary Disabling Condition

Characteristic Sample Size

Total Sample 816 Percent

Mental Illness 236

Age 18-40 Years 41-64 Years Female Race/Ethnicity Hispanic White, Non-Hispanic Black, Non-Hispanic Other, Non-Hispanic

34.1 65.9 60.6

30.5 69.5 62.5

45.0 22.9 27.3 4.7 50.0 40.6

40.7 * 33.3 * 19.3 6.7 56.6 45.4

First Language is not English High School Graduate

Living Arrangements Alone 31.5 32.4 With Spouse 14.6 14.9 With Parent(s) 18.0 ** 17.6 With Other Family Members 30.4 29.6 Other 5.4 5.5 Annual Family Income Less than $10,000 $10,000-$19,999 $20,000 or More

77.3 17.2 5.6

78.8 16.4 4.8

Primary Disabling Condition Characteristic MR/DD Physical Disability 285 Percent 295

Sample Size

Age 18-40 Years 41-64 Years Female Race/Ethnicity Hispanic White, Non-Hispanic Black, Non-Hispanic Other, Non-Hispanic

* 77.1 * 22.9 * 48.7

22.6 77.4 63.1

48.3 ** 12.2 36.5 3.0 ** 31.5 * 24.7

47.2 18.7 30.2 3.8 51.2 42.4

First Language is not English High School Graduate

Living Arrangements Alone * 12.3 37.2 With Spouse * 6.8 17.0 With Parent(s) * 43.9 9.8 With Other Family Members 25.4 Other * 11.6 3.3 Annual Family Income Less than $10,000 $10,000-$19,999 $20,000 or More

32.7

* 64.4 * 24.5 * 11.1

80.4 15.3 4.4

* Significantly different from individuals with a physical disability at the 0.01 level. ** Significantly different from individuals with a physical disability at the 0.05 level. NOTES: SSI is Supplementary Security Income. MR/DD is mental retardation/development disabilities. SOURCE: New York Survey of Working-Age Disabled Medicaid Recipients, 1999-2000. Table 3

Health Care Access and Use for Adult SSI Recipients in New York City, by Disabling Condition: 1999-2000 Primary Disabling Condition Characteristic Total Mental Sample Illness 816 Percent Has Usual Source of Care (other than ER) for Physical Health 93.3 Has Usual Source of Care (other than ER) for Mental Health 44.7 Hospital Stay in Last 12 Months Psychiatric Treatment Multiple Stays ER Visit in Last 12 Months Mental/Emotional Problems Multiple Visits Outpatient Visit in Last 12 Months Physical Health Mental Health Dental Visit Flu Shot Pap Smear (Females) 236

Sample Size

* 88.8 * 74.8

27.5 25.8 3.9 * 8.3 12.6 13.3 48.3 46.4 7.0 * 12.6 26.6 27.8 95.5 95.3 91.9 * 88.5 46.1 * 74.8 69.3 70.8 38.4 35.9 72.0 71.3

Any Unmet Need 37.3 * 47.1 Doctor Care 12.9 ** 18.2 Mental Health Care 6.8 * 11.2 Prescription Drugs 11.4 * 17.4 Dental Care 14.9 ** 20.3 Physical, Occupational, or Speech Therapy 4.5 Special Medical Equipment 7.3 8.9 Rates One or More Aspects of Care as Fair or Poor 68.3

4.6

65.0

Ease of Finding a Doctor who Accepts Medicaid 28.7 Ease of Getting 24.8 23.1 Specialist Medical Care (1) 33.2 36.5 Emergency Medical Care (1) 18.4 17.9 Mental Health Care (1) 43.1 44.0 Primary Disabling Condition Characteristic MR/DD Physical Disability 285 Percent Has Usual Source of Care (other than ER) for Physical Health * 91.9 Has Usual Source of Care (other than ER) for Mental Health * 43.9 Hospital Stay in Last 12 Months Psychiatric Treatment Multiple Stays ER Visit in Last 12 Months Mental/Emotional Problems Multiple Visits Outpatient Visit in Last 12 Months Physical Health Mental Health Dental Visit Flu Shot Pap Smear (Females) 295

29.5

Sample Size

96.9 22.8

* 15.3 32.8 * 4.7 0.4 ** 7.4 13.8 * 39.0 52.7 ** 7.6 2.9 22.2 27.2 ** 92.0 96.8 * 88.8 95.5 * 42.9 25.9 ** 76.3 66.0 ** 32.7 41.9 * 59.9 75.6

Any Unmet Need 26.5 33.6 Doctor Care 7.6 10.8 Mental Health Care 5.8 3.9 Prescription Drugs 5.7 8.9 Dental Care 11.3 12.2 Physical, Occupational, or Speech Therapy 6.4

3.9

Special Medical Equipment

4.2

7.1 72.9 29.0

Rates One or More Aspects of Care as Fair or Poor ** 62.8 Ease of Finding a Doctor who Accepts Medicaid 26.3 Ease of Getting 25.0 26.0 Specialist Medical Care (1) 29.4 32.0 Emergency Medical Care (1) 17.2 19.7 Mental Health Care (1) 40.0 43.4 * Significantly different from individuals with a physical disability at the 0.01 level.

** Significantly different from individuals with a physical disability at the 0.05 level. (1) Those indicating they did not need a particular type of care were excluded from this calculation. NOTES: SSI is Supplementary Security Income. MR/DD is mental retardation/development disabilities. ER is emergency room. Only respondents who had a health care encounter over the past year were asked to rate the ease of finding a doctor or getting care. SOURCE: New York Survey of Working-Age Disabled Medicaid Recipients, 1999-2000. Table 4 Odds Ratios from Logit Regression for Selected Access and Use Measures for Adult SSI Recipients: New York City, 1999-2000 Has Usual Has Usual Source of Care Source of Care Explanatory Variable for Physical Health of Mental Health Sample Size Mental Illness MR/DD Age (Years) Female 811 * 0.314 0.653 * 1.047 1.792 808 * 11.976 * 3.065 1.013 1.241

Black, Non-Hispanic Hispanic Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs

1.694 ** 2.140 1.201 0.844 1.150 1.002

0.847 1.488 0.901 0.980 1.178 0.991 ** 1.725

Survey Respondent is Proxy F-test * 3.20

2.677 * 11.94

Had Hospital Had Multiple Explanatory Variable Stay Hospital Stays Sample Size Mental Illness MR/DD Age (Years) Female Black, Non-Hispanic Hispanic Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs 812 0.743 * 0.293 809 1.073 0.493

** 0.980 0.987 1.213 1.244 0.963 0.713 1.177 0.941 * 2.012 1.493 1.378 * 3.094 1.131 0.880 1.099 1.091 0.945 * 2.93 1.327

Survey Respondent is Proxy F-test * 4.83 Had Explanatory Variable Sample Size Mental Illness MR/DD Age (Years)

Had Multiple ER Visit ER Visits 801 0.817 * 0.504 ** 0.985 795 1.155 0.807 ** 0.981

Female Black, Non-Hispanic Hispanic

** 1.454 1.169 1.367 1.356 1.024 1.326 1.351 * 2.260 1.264 ** 1.826 1.120 1.005 1.075 0.977 0.739 * 2.93 1.009

Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs

Survey Respondent is Proxy F-test * 3.19

Had Outpatient Had Outpatient Visit for Visit for Explanatory Variable Physical Health Mental Health Sample Size Mental Illness MR/DD Age (Years) Female Black, Non-Hispanic Hispanic Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs 813 0.926 0.482 * 1.029 2.89 1.395 * 2.389 1.110 2.011 1.069 1.190 810 * 9.002 * 2.073 1.005 1.323 0.635 1.327 0.974 0.923 1.028 1.101 1.351

Survey Respondent is Proxy F-test * 4.37 Had Explanatory Variable Sample Size Mental Illness MR/DD

* 4.128 * 10.61

Had Dental Visit 760 1.13 1.27 784

Flu Shot

0.948 0.780

Age (Years) Female Black, Non-Hispanic Hispanic Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs

0.990 1.008 0.965 1.112 0.799 * 2.151 0.9556 * 2.016 1.264 1.259 0.831 1.360 0.925 1.036 1.029 0.987 * 1.770 * 2.29 1.472

Survey Respondent is Proxy F-test 1.48

Had Pap Smear Had Any Explanatory Variable (Female) Unmet Need Sample Size Mental Illness MR/DD 453 0.923 0.728 816 * 1.824 0.763

Age (Years) 1.002 0.987 Female -1.216 Black, Non-Hispanic 1.445 0.964 Hispanic ** 1.832 0.858 Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs 1.522 1.346 0.941 ** 1.730 1.099 0.895 * 0.856 1.027 0.693 * 3.09 0.636

Survey Respondent is Proxy F-test ** 2.19

Had Unmet Had Unmet Need for Need for Mental Explanatory Variable Doctor Care Health Care Sample Size 804 809

Mental Illness MR/DD Age (Years) Female Black, Non-Hispanic Hispanic Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs

** 1.729 0.824 0.999 1.116 0.811 0.869 1.492 0.691 0.991 1.033

** 2.790 0.912 * 0.941 1.531 0.893 0.881 ** 2.875 1.067 0.933 1.015 0.561

Survey Respondent is Proxy F-test ** 1.89

** 0.445 * 2.71

Rates Ease of Rates Ease of Getting Specialist, Finding Doctor Mental Health, or for Medicaid as ER Care as Explanatory Variable Fair or Poor Fair or Poor Sample Size Mental Illness MR/DD Age (Years) Female Black, Non-Hispanic Hispanic Fair or Poor Health Mobility Limitation Number of Other ADLs Number of IADLs 776 0.771 0.686 ** 0.979 ** 0.652 ** 0.502 * 0.453 1.388 0.616 1.148 1.001 816 0.995 0.669 * 0.976 ** 1.465 0.976 0.687 ** 1.556 1.587 0.963 1.061 0.898

Survey Respondent is Proxy F-test ** 2.18

0.660 * 2.75

* Significantly different from zero at the 0.01 level. ** Significantly different from zero at the 0.05 level. NOTES: SSI is Supplementary Security Income. ER is emergency room. MR/DD is mental retardation/development disabilities. ADLs are activities of daily living. IADLs are instrumental activities of daily living. SOURCE: New York Survey of Working-Age Disabled Medicaid Recipients, 1999-2000. ACKNOWLEDGMENTS See About this product. The authors would like to thank Anne Anne, British princess Anne (Anne Elizabeth Alice Louise), 1950, British princess, only daughter of Queen Elizabeth II and Prince Philip, duke of Edinburgh. She was educated at Benenden School. Ciemnecki, Karen Karen Any member of a variety of tribal peoples of southern Myanmar (Burma). Constituting the second largest minority in Myanmar, the Karen are not a unitary group in any ethnic sense, as they differ among themselves linguistically, religiously, and economically. Cybulski, Michael Sinclair Michael Sinclair is the name of several notable people: Michael Sinclair (British Army officer), a British World War II officer, notable for being held captive in Colditz Castle Michael Sinclair (American football), a retired American football player , Nikki Highsmith, Paul Boben, and John Holahan for their support and assistance with this article.

(1) Voluntary enrollment in Medicaid managed care ranged from 7 percent of those with MR/DD to between 11 and 12 percent of both those with mental illness and those with physical disabilities. Small sample sizes prevent any separate analyses of those individuals.

(2) Ninety-seven percent of the sample of SSI beneficiaries was on Medicaid for the full 12 months of the past year.

(3) Coughlin, Long, and Kendall (2002) provide additional information on the strategies used in conducting a telephone survey of

the disabled population.

(4) We obtained locating information from Medicaid Program records, directory assistance, the U.S. Postal Service postal service, arrangements made by a government for the transmission of letters, packages, and periodicals, and for related services. Early courier systems for government use were organized in the Persian Empire under Cyrus, in the Roman Empire, and in medieval , online address data bases, credit bureau checks, contacts with neighbors and field locators out in the community.

(5) The characteristics of SSI beneficiaries nationwide are unpublished tabulations from the National Survey of America's Families (NSAF NSAF National Survey of American Families NSAF Non-Standard Allowance File NSAF Nitrifying Submerged Aeration Filter (tertiary water treatment method) ). NSAF is a nationally representative survey of the non-aged adults and children (Kenney, Scheuren, and Wang (Wang Laboratories, Inc., Lowell, MA) A computer services and network integration company. Wang was one of the major early contributors to the computing industry from its founder's invention that made core memory possible, to leadership in desktop calculators and word processors. , 1999).

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Meyer, J. and Zeller, P.J.: Profiles of Disability: Medicaid and Uninsured Populations, A Data Book. Economic and Social Research Institute The Economic and Social Research Institute in Ireland produces research focusing on Ireland's economic and social development in order to inform policy-making and societal understanding. . Washington, DC. 2001

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Reprint reprint An individually bound copy of an article in a journal or science communication Requests: Sharon K. Long, Ph.D., the Urban Institute, 2100 M Street, NW., Washington, DC. 20037. E-mail: slong@ui.urban.org

Sharon K. Long, Teresa A. Coughlin, and Stephanie J. Kendall are with the Urban Institute. This research was funded by the Center for Health Care Strategies, Inc. It builds on earlier analyses funded by the Centers for Medicare & Medicaid Services (CMS) under Contract Number 500-95-0040. The views expressed in this article are those of the

authors and do not necessarily reflect the views of the Urban Institute, Center for Health Care Strategies, or CMS. Nutrition Club