Medicaid home care services and survival in New York City

PURPOSE: New York City's Medicaid Home Care Services Program provides an integrated program of housekeeping and personal assistance care along with regular nursing assessments. We sought to determine if this program of supportive care offers a survival benefit to older adults. DESIGN AND METHODS: Administrative data from New York City's Medicaid Home Care Services Program were merged with epidemiologic and diagnostic data collected in a community study of older adults living in northern Manhattan. Of 866 older adults with Medicaid coverage living in the community, 288 (33.3%) received Medicaid home care services in the period from 1994 to 1996. Mortality was tracked through the end of 1999. RESULTS: In proportional hazards models that adjusted for differences in sociodemographic, medical, and functional status, use of Medicaid home care service was associated with a significantly reduced risk of death in people with disability in activities of daily living. IMPLICATIONS: Because the program has distinctive features (greater number of weekly hours than other programs, integration with nursing assessments), it is a special case of community-based long-term care. Still, results from this observational cohort suggest that mortality risk in the most vulnerable elderly population can be reduced through a program of supportive care.     

Clinic Services for Persons with AIDS: Experience in a High-Prevalence State

OBJECTIVE: To profile characteristics of clinics caring for persons with advanced HIV infection. DESIGN AND SETTING: Survey of clinic directors in New York State. PARTICIPANTS: Newly diagnosed Medicaid-enrolled AIDS patients in New York state in federal fiscal years 1987-1992 (n = 6,184) managed by 62 HIV specialty, 53 hospital-based general medicine/primary care, 36 community-based primary care, and 28 other clinics. MEASUREMENTS AND MAIN RESULTS: Telephone survey about clinic hours, emphasis on HIV, staffing, procedures, and directors' rating of care. Estimates of the number of newly diagnosed, Medicaid-enrolled AIDS patients treated in surveyed clinics were obtained from claims data. We found that community-based clinics were significantly more likely to have longer hours, a physician on call, or to accommodate unscheduled care than were hospital-based general medicine/primary care or other types of clinics. Compared with HIV specialty clinics, general medicine/primary care clinics were less likely to have HIV-specific care attributes such as a director of HIV care (98% vs 72%), multidisciplinary conferences on HIV care (83% vs 32%), or a standard initial HIV workup (90% vs 70%). Of general medicine/primary care clinics, most (83%) were staffed by residents and fellows compared with only 68% of HIV or 25% of community-based clinics (p < .001). General medicine/primary care clinics were less likely than community-based clinics to perform Pap smears (75% vs 94%) or to have case managers on payroll (21% vs 81%). CONCLUSIONS: In this sample of clinics, hospital-based general medicine/primary care clinics managing the care of Medicaid enrollees with AIDS appeared to have more limited hours and availability of specific services than HIV specialty or community-based clinics.     

Receiving help at home: the interplay of human and technological assistance.

OBJECTIVES: This research investigated use of mobility equipment as a substitute for human assistance and also examined whether use of mobility equipment results in out-of-pocket cost savings associated with formal home care services. METHODS: The authors analyzed data collected from 9,230 respondents to the Adult Followback Survey of the Disability Supplement to the 1994 and 1995 National Health Interview Survey (NHIS-D) who reported both mobility and limitations in daily living activities to test study hypotheses, using regression analyses to control for selection effects in mobility equipment use. RESULTS: Use of canes and crutches (but not walkers and wheelchairs) reduced both formal and informal hours of care received per week by sample members; there was also evidence of substitution on the individual activities of daily living task level. Use of canes and crutches was also associated with lower out-of-pocket costs for formal helping services. DISCUSSION: Findings suggest that canes and crutches are effective and efficient home care resources that have the potential to increase the autonomy of adults with disabilities and to facilitate chronic condition self-management.     

Are consumer-directed home care beneficiaries satisfied? Evidence from Washington state

PURPOSE: This study analyzed the effect of consumer-directed versus agency-directed home care on satisfaction with paid personal assistance services among Medicaid beneficiaries in Washington State. DESIGN AND METHODS: The study analyzed a survey of 513 Medicaid beneficiaries receiving home- and community-based services. As part of a larger study, we developed an 8-item Satisfaction With Paid Personal Assistance Scale as the measure of satisfaction. In predicting satisfaction with personal assistance services, we estimated an ordinary least squares regression model that was right-censored to account for the large percentage of respondents who were highly satisfied with their care. RESULTS: Among the older population, but not younger people with disabilities, beneficiaries receiving consumer-directed services were more satisfied than individuals receiving agency-directed care. There was no evidence that quality of care was less with consumer-directed services. In addition, overall satisfaction levels with paid home care were very high. IMPLICATIONS: This study supports the premise that consumer satisfaction, an important measure of quality, in consumer-directed home care is not inferior to that in agency-directed care. The positive effect of consumer direction for older people underlines the fact that this service option is relevant for this population. In addition, this research provides evidence that home- and community-based services are of high quality, at least on one dimension.     

How important is functional status as a predictor of service use by older people?

In studies of older people, it is often assumed that biophysical, or functional, status is the primary determinant of formal service use. This article reports baseline data from a longitudinal study of a community-based, linked random sample of frail elders (n = 635) and their informal caregivers (n = 429) to investigate the relative contribution of social circumstances to the use of community-based formal services. Elder respondents were categorized into three groups defined by their primary source of care: (a) informal only, (b) mixed help with predominantly informal care, (c) mixed help with predominantly formal services. Of the respondents, 79% received most of their help from informal caregivers, whereas 21% relied on formal services for most of their assistance. A series of logistic regression models were developed to identify variables that discriminated between major sources of care. The social factor of living alone is the consistent predictor of reliance on formal services. Only for those elders living alone does the physical factor of level of frailty predict reliance on formal services. Elders who live with a caregiver, particularly a spouse, are likely not to use any formal services regardless of their level of frailty. Finally, elders reliant on formal services receive much less care overall.     

AIDS advocates, caregivers must play major role in managed care debates

As managed care becomes the primary delivery mode for health maintenance organizations and more states try to shift Medicaid programs to managed care, HIV-positive patients and providers should become active in making sure their states formulate adequate Medicaid managed care plans. People with HIV have experienced problems with Medicaid managed care plans, including restricted access to HIV-experienced providers and specialists, restricted availability of drugs through the plan, and limited coverage of pharmaceuticals. AIDS advocates helped to reject Medicaid waiver proposals in New York City and New York State by showing that managed care companies were not prepared to provide adequate care to HIV-positive patients. The shift to managed care has created opportunities to improve health care. The first Medicaid managed care program specifically for AIDS patients was created last year in Los Angeles and is now operating successfully. A New York state law implemented this year is designed to make it easier for people with AIDS and other chronic diseases to join health maintenance organizations and to see specialists without referrals, in exchange for higher premiums and copayments.     

Validity of gout diagnoses in administrative data

OBJECTIVE: To determine the utility of using administrative data for epidemiologic studies of gout by examining the validity of gout diagnoses in claims data. METHODS: From a population of approximately 800,000 members from 4 managed care plans, we identified patients who had at least 2 ambulatory claims for a diagnosis of gout between January 1, 1999 and December 31, 2003. From this group, a random sample of 200 patients was chosen for medical record review. Trained medical record reviewers abstracted gout-related clinical, laboratory, and radiologic data from the medical records. Two rheumatologists independently evaluated the abstracted information and assessed whether the gout diagnosis was probable/definite or unlikely/insufficient information. Discordant physician ratings were adjudicated by consensus. Based on record reviews, patients were also classified according to the American College of Rheumatology (ACR), Rome, and New York gout criteria and these results were compared with the physician global assessments. RESULTS: There were 121 patients rated as having probable/definite gout by physician consensus, leading to a positive predictive value of >or=2 coded diagnoses of gout of 61% (95% confidence interval 53-67). There was low concordance between physician assessments and established gout criteria including ACR, Rome, and New York criteria (kappa = 0.17, 0.16, and 0.20, respectively). CONCLUSION: Use of administrative data alone in epidemiologic and health services research on gout may lead to misclassification. Medical record reviews for validation of claims data may provide an inadequate gold standard to confirm gout diagnoses.     

Effect of a consumer-directed voucher and a disease-management-health-promotion nurse intervention on home care use

PURPOSE: We describe the impact of two interventions, a consumer-directed voucher for in-home supportive services and a chronic disease self-management-health-promotion nurse intervention, on the probability of use of two types of home care-skilled home health care and personal assistance services-received by functionally impaired Medicare beneficiaries. DESIGN AND METHODS: The Medicare Primary and Consumer-Directed Care Demonstration was a randomized controlled trial in 19 counties in New York, West Virginia, and Ohio with four groups: disease-management-health-promotion nurse, consumer-directed voucher, combination (nurse plus voucher), and control. We estimated a bivariate probit model for the 1,394 individuals aged 65 or older who had no private long-term-care insurance. RESULTS: Whereas the nurse intervention alone had no effect on the probability of using either type of home care, the voucher alone increased the probability of personal assistance services use by 13% (p =.002) but not that of skilled home health care use. The combination of the two interventions increased the probability of personal assistance services use by 18% (p <.001). IMPLICATIONS: The implementation of disease-management-health-promotion nurse interventions should not lead to a greater probability of skilled home health care or personal assistance services use, whereas the provision of consumer-directed vouchers should result in an increased probability of personal assistance services use, as intended.     

Knowledge about and behaviors affecting the spread of AIDS: a street survey of intravenous drug users and their associates in New York City

An informal survey of knowledge about and behaviors relevant to the spread of AIDS was conducted on the street in New York City during October 1986. The sample (n = 204) includes IV drug users (60%) and others (40%). The informal nature of the interview suggests that respondents gave "salient" answers rather than the complete answers that would be expected in a formal interview situation. A smaller proportion of respondents reported salient knowledge about drug-related transmission of AIDS than had been found in other populations, using formal interview methods. A close association was found between any accurate knowledge about spread of AIDS and likelihood of practicing one or more risk reduction behaviors. New users (persons who had been using drugs for only 1 or 2 years) were significantly less likely than others to have salient knowledge about AIDS transmission and also less likely to practice risk reduction measures.     

Stressors and rewards for workers in AIDS service organizations

The primary objective of this study was to examine the impact of recent advances in the treatment of HIV/AIDS on AIDS service providers. The study surveyed the motivations, stressors, and rewards of workers employed in AIDS service organizations. Employees of AIDS service organizations play a valuable role in providing services to people with HIV/AIDS, and their motives and attitudes about their jobs are significantly related to the quality of care provided to clients. A total of 180 employees from nine AIDS service organizations in New York City completed a self-administered questionnaire. The questionnaire consisted of demographic, motivation, stressor, and reward items. This ethnically diverse sample consisted of social service workers (56%), administrative workers (22%), health care workers (18%), and other workers (4%). Forty-two percent of respondents had been working in the AIDS field for 5 or more years. The main reasons for choosing this line of work were a desire to help others, followed by having experienced the loss of a loved one to AIDS. Overall, respondents rated the level of stressors in their jobs as moderate. The main category of stress was "lack of support" (referring to the availability of resources and support for clients). The most important individual stressors were societal attitudes towards AIDS, salary, client deaths, and administrative duties. The most highly valued reward factor associated with AIDS caregiving was "personal effectiveness." Overall, the rewards of AIDS caregiving outweighed the stressors, for respondents. Implications of these findings for administrators of AIDS service organizations are discussed.     

The Events in Care Screening Questionnaire (ECSQ): a new tool to identify needs and concerns of people with HIV/AIDS

The purpose of this paper is to present validation data on the Events in Care Screening Questionnaire (ECSQ), which was designed to identify the needs and concerns of people living with HIV/AIDS (PLWHA) in nine specific domains: adherence to medical instructions; medical problems; specialty and inpatient hospital care; preventive health care and screening and behavioral health; sexual risk behavior; family planning; psychological symptoms; substance use; and life circumstances and demands. The ECSQ is the anchor for a more comprehensive measure called "The Dynamics of Care," and was administered in the context of a longitudinal study to evaluate New York State's HIV Special Needs Plan (HIV SNP), a Medicaid managed care model for PLWHA. Participants in the study, which began in March 2003 and closed recruitment in January 2007, were NYC PLWHA who were enrolled in either a Medicaid HIV SNP or Fee-For-Service plan. Participants were recruited through HIV SNP enrollment lists, direct on-site recruitment, and fliers. The specific event domains covered in the ECSQ were selected based on the purpose of the HIV SNP and the literature describing the needs and challenges that PLWHA face. Analyses are based on data from 628 study respondents over two times points. Results suggest that the concerns identified by PLWHA were largely consistent with their health care situation, heath status, risk behavior, and personal characteristics. Findings presented here lend support for the construct validity of the ECSQ and demonstrate its value as a starting point for inquiring more fully about the experiences of patients and improving the care they receive.     

Barriers to enrollment in drug abuse treatment and suggestions for reducing them: opinions of drug injecting street outreach clients and other system stakeholders

Alcohol and other drug abuse (AOD) treatment is a major means of HIV/AIDS prevention, yet clients of street outreach programs (SOP) who are injection drug users (IDU), and outreach workers and staff as well, report various obstacles to enrolling clients in AOD programs. This study assessed the barriers to AOD enrollment facing high risk street outreach clients and obtained suggestions for reducing them. Data were obtained from semistructured field interviews with: 1) IDU outreach clients (N = 144) of the six SOPs in New York City (NYC) and northern suburbs supported by the Office of Alcoholism and Substance Abuse Services (OASAS), the single state agency in New York State for AOD prevention and treatment, 2) outreach workers and staff of the six SOPs (N = 55), 3) staff of detox and AOD treatment programs in major modalities treating IDUs (N = 71), and 4) officials and administrators (N = 11) in OASAS, the AIDS Institute of the Department of Health (addresses all aspects of the HIV/AIDS epidemic in New York State), and the agency for public assistance in New York City, the Human Resources Administration (HRA). Principal barriers for street outreach clients included personal-family issues, lack of insurance/Medicaid, ignorance, suspicion, and/or aversion to AOD treatment (methadone maintenance especially), "hassles" with Medicaid, lack of personal ID, lack of "slots," limited access to intake, homelessness, childcare-child custody issues. Further, about 18% had no desire for AOD services, reported no barriers, or were too enmeshed in addiction to enroll. Outreach staff cited prospective client's lack of ID and lack of Medicaid, lack of "slots," and stakeholder agency bureaucracy. Treatment staff cited lack of client readiness, "hassles" posed by welfare reform, AOD programs' own "red tape," waiting lists, and near exclusionary preference for the Medicaid-eligible. Finally, agency managers cited client factors, inadequate funding and lack of appropriate programs, treatment program requirements, and societal stigmatization of addicts. Proposed remedies included dropping ID and insurance requirements for admission, major increases in resources, funding the transporting of outreach client treatment candidates to AOD services sites, education and training initiatives, increased inter-agency cooperation, and the need for stakeholder agencies, OASAS especially, to more effectively integrate abstinence-oriented AOD services with harm reduction and the public health aspects of AOD problems.     

Reconsidering substitution in long-term care: when does assistive technology take the place of personal care?

OBJECTIVE: Assistive technology (AT) may improve quality of life and reduce dependence for older persons with disabilities. In this article, we examine tradeoffs between the use of AT and reliance on personal care, with attention to factors that may influence those relationships. METHODS: We jointly modeled hours of formal and informal care with use of AT in order to address the interdependence of these outcomes in ways not taken into account in previous studies. We analyzed a national sample of older persons with difficulty in activities of daily living drawn from Phase 2 of the 1994-1995 National Health Interview Survey (NHIS) Disability Supplement. RESULTS: Our findings show that the use of AT was associated with reductions in informal care hours, especially for those who were unmarried, better educated, or had better cognitive abilities, but appeared to supplement formal care services for these groups. Individuals with cognitive impairment were less likely than others to substitute AT with either type of personal care. DISCUSSION: These models raise the possibility that reductions of informal care hours may be accomplished with a combination of formal care and assistive devices, rather than from either alternative alone.     

Health care financing policy for hospitalized pulmonary medicine patients

Several federal bodies provide ongoing analyses of the Medicare DRG prospective hospital payment system. Many states are using DRG prospective "all payor systems" for hospital reimbursement (based on the federal model). In All Payor Systems, Medicare, Medicaid, Blue Cross and other commercial insurers pay by the DRG mode; New York State has been All Payor since 1/1/88. This study simulated DRG All Payor methods on a large sample (n = 1,662) of pulmonary medicine patients for a two-year period using both federal and New York DRG reimbursement now in effect at our hospital. Medicare patients had (on average) a longer hospital length of stay and total hospital cost compared to patients from Medicaid, Blue Cross, and other commercial payors. Medicare patients also had a greater severity of illness compared to patients from Blue Cross Medicaid or other payors. All payors, however, (Medicaid, Blue Cross, Medicare and commercial insurers) generated significant financial risk under the DRG All Payor scheme. These data suggest that federal, state, and private payors may be underreimbursing for the care of the hospitalized pulmonary medicine patients using the DRG prospective hospital payment scheme. Health care financing policy, as demonstrated in this study, may limit both the access and quality of care for many pulmonary medicine patients in the future.     

Health care financing policy for hospitalized rheumatology patients

The federal Medicare Diagnostic Related Group (DRG) prospective payment model is changing hospital payment. Currently many states are using DRG prospective "All Payor Systems" for hospital reimbursement. In All Payor Systems, Medicare, Medicaid, Blue Cross and other commercial insurers, pay by the DRG mode; New York State has been All Payor since January 1, 1988. This study simulated DRG All Payor methods on a sample (N = 298) of rheumatology patients for a 3-year period using both federal and New York DRG reimbursement now in effect. Both Medicare and Medicaid patients had (on average) a longer hospital length of stay and total hospital cost compared to patients from Blue Cross and other commercial payors. All payors (i.e., Medicaid, Blue Cross, Medicare and commercial insurors) generated significant financial risk under the DRG All Payor scheme. If these findings are replicated at other hospitals, rheumatology patients could suffer a decline in both access and quality of care.     

Persistent Depression Affects Adherence to Secondary Prevention Behaviors After Acute Coronary Syndromes

OBJECTIVE: To determine whether racial differences in hospital mortality worsened after implementation of a New Jersey law in 1993 that reduced subsidies for uninsured hospital care and changed hospital payment from rate regulation to price competition. DATA SOURCES/STUDY SETTING: State discharge data for New Jersey and New York from 1990 to 1996. STUDY DESIGN: We used an interrupted time series design to compare risk-adjusted in-hospital mortality rates between states over time. Adjusting for patient characteristics, baseline interstate differences, and common intertemporal trends, we compared the effect sizes for whites and blacks in the following 4 groups: overall, uninsured, insured under age 65, and Medicare patients. DATA COLLECTION/EXTRACTION METHODS: The study sample included 1,357,394 patients admitted to New Jersey or New York hospitals between 1990 to 1996 with stroke, hip fracture, pneumonia, pulmonary embolism, congestive heart failure, or acute myocardial infarction (AMI). PRINCIPAL FINDINGS: The increase in mortality in New Jersey versus New York was significantly larger among blacks than among whites for AMI (2.4% points vs 0.1% points, P-value for difference .026) but not for the other 6 conditions. In groupings of conditions for which hospital admission is non-discretionary and conditions in which admission is discretionary, we found qualitatively larger increases in mortality for blacks but no statistically significant racial differences among patients overall, uninsured patients, insured patients under age 65, or Medicare patients. CONCLUSIONS: Market-based reform and reductions in subsidies for hospital care for the uninsured in New Jersey were associated with worsening racial disparities in in-hospital mortality for AMI but not for 6 other common conditions.     

The effect of equipment usage and residual task difficulty on use of personal assistance, days in bed, and nursing home placement

OBJECTIVES: To determine whether residual difficulty in functioning in spite of equipment use is linked with increased use of personal assistance. DESIGN: Longitudinal. Two waves of the Asset and Health Dynamics Among the Oldest Old (AHEAD) database were used to test the effect of residual difficulty on hours of personal assistance and bed days at Wave 1 on hours of personal assistance, bed days, and nursing home placement at Waves 1 and 2. SETTING: A nationally representative setting of community-dwelling persons aged 70 and older and their spouses, regardless of age at Wave 1 AHEAD. There was movement of some respondents into nursing homes by the Wave 2 interview. PARTICIPANTS: Respondents to the AHEAD survey, N=8,222 at Wave 1. MEASUREMENTS: The dependent variables were hours of personal assistance in the month before the AHEAD survey (Waves 1 and 2), number of days in month before the survey in which the person did not get out of bed (Waves 1 and 2), and residence in a nursing home at Wave 2. The key explanatory variable was a mutually exclusive (four category) variable that specified whether there was residual difficulty (yes/no) in indoor mobility in spite of using equipment to aid specifically with indoor mobility. The four-category variable was defined by the four categories created by a cross-tabulation of equipment use (yes/no) and difficulty with indoor mobility (yes/no). A similar four-category variable was also defined for transferring in the home. RESULTS: In cross section, equipment users with residual difficulty reported more hours of personal assistance in the case of indoor mobility impairment and were more likely to have some hours of personal assistance than those without residual difficulty with indoor mobility and transferring. Longitudinally, those with residual difficulty at Wave 1 were more likely to need some personal assistance hours at Wave 2 (odds ratio=1.67, 95% confidence interval= 1.23-2.26 for indoor mobility). For transferring, those with residual difficulty had 43 more hours of personal assistance per month (P=.001) than those for whom equipment resolved their disability. Residual disability was linked to more bed days for users of indoor mobility and transferring equipment, but it was not predictive of nursing home placement by Wave 2. CONCLUSION: Equipment for indoor mobility or transfers apparently resolves difficulty for some users of the equipment but not for others. Residual task difficulty in spite of equipment for indoor mobility and transferring is linked with worse outcomes, including increased dependency on personal assistance and more days in bed. This shows that more attention is needed to determine whether equipment prescribed is appropriate for a patient's difficulty and that follow-up assessment is crucial after equipment is prescribed.     

Communication about chronic critical illness

BACKGROUND: Despite poor outcomes, life-sustaining treatments including mechanical ventilation are continued for a large and growing population of patients with chronic critical illness. This may be owing in part to a lack of understanding resulting from inadequate communication between clinicians and patients and families. Our objective was to investigate the informational needs of patients with chronic critical illness and their families and the extent to which these needs are met. METHODS: In this prospective observational study conducted at 5 adult intensive care units in a large, university-affiliated hospital in New York, New York, 100 patients with chronic critical illness (within 3-7 days of elective tracheotomy for prolonged mechanical ventilation) or surrogates for incapacitated patients were surveyed using an 18-item questionnaire addressing communication about chronic critical illness. Main outcome measures included ratings of importance and reports of whether information was received about questionnaire items. RESULTS: Among 125 consecutive, eligible patients, 100 (80%) were enrolled; questionnaire respondents included 2 patients and 98 surrogates. For all items, more than 78% of respondents rated the information as important for decision making (>98% for 16 of 18 items). Respondents reported receiving no information for a mean (SD) of 9.0 (3.3) of 18 items, with 95% of respondents reporting not receiving information for approximately one-quarter of the items. Of the subjects rating the item as important, 77 of 96 (80%) and 69 of 74 (93%) reported receiving no information about expected functional status at hospital discharge and prognosis for 1-year survival, respectively. CONCLUSIONS: Many patients and their families may lack important information for decision making about continuation of treatment in the chronic phase of critical illness. Strategies for effective communication in this clinical context should be investigated and implemented.