Unlicensed care homes in the United States: a clandestine sector of long-term care.

Residential care facilities operating without a state license are known to house vulnerable adults. Such unlicensed care homes (UCHs) commonly operate illegally, making them difficult to investigate. We conducted an exploratory, multimethod qualitative study of UCHs, including 17 subject matter expert interviews and site visits to three states, including a total of 30 stakeholder interviews, to understand UCH operations, services provided, and residents served. Findings indicate that various vulnerable groups reside in UCHs; some UCHs offer unsafe living environments; and some residents are reportedly abused, neglected, and financially exploited. Regulations, policies, and practices that might influence UCH prevalence are discussed.

The interRAI Pediatric Home Care (PEDS HC) Assessment: Evaluating the Long-term Community-Based Service and Support Needs of Children Facing Special Healthcare Challenges.

The vast majority of assessment instruments developed to assess children facing special healthcare challenges were constructed to assess children within a limited age range or children who face specific conditions or impairments. In contrast, the interRAI Pediatric Home Care (PEDS HC) Assessment Form was specifically designed to assess the long-term community-based service and support needs of children and youth aged from four to 20 years who face a wide range of chronic physical or behavioral health challenges. Initial research indicates that PEDS HC items exhibit good predictive validity-explaining significant proportions of the variance in parents' perceptions of needs, case managers' service authorizations, and Medicaid program expenditures for long-term community-based services and supports. In addition, PEDS HC items have been used to construct scales that summarize the strengths and needs of children facing special healthcare challenges. Versions of the PEDS HC are now being used in Medicaid programs in three states in the United States.

Personal care services provided to children with special health care needs (CSHCN) and their subsequent use of physician services.

BACKGROUND: Medicaid Personal Care Services (PCS) help families meet children's needs for assistance with functional tasks. However, PCS may have other effects on a child's well-being, but research has not yet established the existence of such effects. OBJECTIVES: To investigate the relationship between the number of PCS hours a child receives with subsequent visits to physicians for evaluation and management (E&M) services. METHODS: Assessment data for 2058 CSHCN receiving PCS were collected in 2008 and 2009. Assessment data were matched with Medicaid claims data for the period of 1 year after the assessment. Zero-inflated negative binomial and generalized linear multivariate regression models were used in the analyses. These models included patient demographics, health status, household resources, and use of other medical services. RESULTS: For every 10 additional PCS hours authorized for a child, the odds of having an E&M physician visit in the next year were reduced by 25%. However, the number of PCS hours did not have a significant effect on the number of visits by those children who did have a subsequent E&M visit. A variety of demographic and health status measures also affect physician use. CONCLUSIONS: Medicaid PCS for CSHCN may be associated with reduced physician usage because of benefits realized by continuity of care, the early identification of potential health threats, or family and patient education. PCS services may contribute to a child's well-being by providing continuous relationships with the care team that promote good chronic disease management, education, and support for the family.

Nursing homes and the affordable care act: a cease fire in the ongoing struggle over quality reform.

Most provisions in the Affordable Care Act that affect nursing homes originated in two earlier attempts at reform, both of which failed multiple times in prior Congressional sessions: the Elder Justice Act and the Nursing Home Transparency and Improvement Act. Both of these earlier efforts focused on improving quality and reducing elder abuse in nursing homes by strengthening oversight and enforcement penalties, expanding staff training, and increasing the information on nursing home quality available to consumers and regulators. Each bill addressed problems that were serious, widespread, and had persisted for years, but each failed to pass on its own. The Affordable Care Act, with its own momentum, became the vehicle for their passage. However, the reasons the bills failed in these earlier efforts suggest implementation challenges now that they have ridden into law on the coattails of the more general effort to reform the health care sector.

Summarizing activity limitations in children with chronic illnesses living in the community: a measurement study of scales using supplemented interRAI items.

BACKGROUND: To test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. The scales were based on information provided by caregivers to service program personnel almost exclusively trained as social workers. The items used to measure activity limitations were interRAI items supplemented so that they were more applicable to activity limitations in children with chronic illnesses. In addition, these analyses may shed light on the possibility of gathering functional information that can span the life course as well as spanning different care settings. METHODS: Analyses included testing the internal consistency, predictive, concurrent, discriminant and construct validity of two activity limitation scales. The scales were developed using assessment data gathered in the United States of America (USA) from over 2,700 assessments of children aged 4 to 20 receiving Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, specifically Personal Care Services to assist children in overcoming activity limitations. The Medicaid program in the USA pays for health care services provided to children in low-income households. Data were collected in a single, large state in the southwestern USA in late 2008 and early 2009. A similar sample of children was assessed in 2010, and the analyses were replicated using this sample. RESULTS: The two scales exhibited excellent internal consistency. Evidence on the concurrent, predictive, discriminant, and construct validity of the proposed scales was strong. Quite importantly, scale scores were not correlated with (confounded with) a child's developmental stage or age. The results for these scales and items were consistent across the two independent samples. CONCLUSIONS: Unpaid caregivers, usually parents, can provide assessors lacking either medical or nursing training with reliable and valid information on the activity limitations of children. One can summarize these data in scales that are both internally consistent and valid. Researchers and clinicians can use supplemented interRAI items to provide guidance for professionals and programs serving children, as well as older persons. This research emphasizes the importance of developing medical information systems that allow one to integrate information not only across care settings but also across an individual's life course.

Severity of children's intellectual disabilities and Medicaid personal care services.

OBJECTIVES: This research investigated the relationship between a child's reported intellectual disability (ID) level and caregivers' reports of the child's health status to predict Medicaid Personal Care Services (PCS) hours authorized for that child. We also investigated how activity limitations in the home varied with the level of ID. DESIGN: The sample included 1,108 community-residing children with a reported level of ID in the Texas Medicaid system and who were assessed for the PCS program. All data were collected with the Personal Care Assessment Form (PCAF), an instrument developed by the authors for evaluating children's PCS needs. Case managers completed the PCAF in the child's home with the child and primary caregivers present. Structural equation modeling (SEM) was used to test a model reflecting the role of ID and other characteristics of the child in determining the number of PCS hours authorized. Additional analyses revealed the degree to which variation among the case managers affected the number of hours authorized. RESULTS: ID level and other individual characteristics had a significant effect on reports of a child's activity limitations (R2 = .67), which in turn affected the hours of PCS authorized (R2 = .27). We found no significant direct relationship between ID level and PCS hours: ID level had an indirect relationship on PCS hours through activity limitations. When the variance in hours authorized was decomposed, individual characteristics accounted for 20% of the variance and case managers accounted for 14%. CONCLUSIONS: Assessments of caregiver and child strengths and limitations in the home are critical in the allocation of Medicaid home-based services, above and beyond the information conveyed by demographic and diagnostic data. Implications for home-based assessments of functional limitations and needs for family caregivers and their children with ID are discussed.

Medicaid Personal Care Services and caregivers' reports of children's health: the dynamics of a relationship.

OBJECTIVE: To investigate the relationship between Medicaid Personal Care Services (PCS) and caregivers' reports of activity (activities of daily living [ADL]) limitations for children with chronic health problems. DATA SOURCES/STUDY SETTING: Primary data collected in 2008 and 2009. A state Medicaid program was the setting. The focus was children receiving Medicaid PCS. DATA COLLECTION: Medicaid case managers assessed children to determine their need for PCS, using information provided by the child or informal caregivers. Two thousand seven hundred assessments were provided to researchers directly from case managers. PRINCIPAL FINDINGS: Medical conditions and impairments explained 58 percent of the variance in the child's activity limitations. Activity limitations and problem behaviors explained 28 percent of the variance in PCS hours authorized. Which case manager completed the assessment also played a substantial role in determining hours of care. CONCLUSIONS: Caregivers' reports of the severity of a child's activity limitations effectively summarize the effects of conditions and impairments on the child's ADL performance and have a significant impact on the level of services provided. Assessors often respond differently to children's characteristics and circumstances as they move from assessment to decisions concerning care provision. Our results imply that the provision of appropriate services may be enhanced when both case managers and caregivers play an active role in decisions concerning care provision.

Reliability and the measurement of activity limitations (ADLs) for children with special health care needs (CSHCN) living in the community.

PURPOSE: Meeting the personal care challenges of children with special health care needs (CSHCN) living in the community demands a reliable assessment of their abilities to perform activities of daily living (ADLs). This research investigates factors affecting the inter-rater reliability of functional assessments of CSHCN conducted in the home. METHODS: Dual-standardised assessments were conducted with 236 community-dwelling CSHCN seeking or receiving Medicaid Personal Care Services (PCS) in a single state in USA. RESULTS: Analyses revealed that assessments of CSHCN with the greatest or least amount of activity limitations exhibited the greatest agreement. The greatest disagreement occurred when assessors faced children with moderate to moderately severe activity limitations. Specific ADLs, where the greatest and least agreements occurred, varied by the level of the child's overall activity limitation. CONCLUSIONS: These results imply that the most serious challenges to the reliability of home-based assessment of ADLs among CSHCN occur in cases of children with moderate or moderately severe activity limitations.

Providing appropriate services to individuals in the community: a preliminary case-mix for model allocating personal care services.

Personal care services are often provided to clients in community settings through highly discretionary processes. Such processes provide little guidance for caseworkers concerning how public resources should be allocated. The results of such processes almost guarantee that individuals with very similar needs will receive very different levels of care resources. Such disparities in treatment open the door to inequity and ineffectiveness. One way to address this problem is through case-mix classification systems that allocate hours of care according to client needs. This paper outlines the preliminary steps taken by one state in its movement toward such a system.

Comparing staffing levels in the Online Survey Certification and Reporting (OSCAR) system with the Medicaid Cost Report data: are differences systematic?

PURPOSE: This study had two goals: (a) to assess the validity of the Online Survey Certification and Reporting (OSCAR) staffing data by comparing them to staffing measures from audited Medicaid Cost Reports and (b) to identify systematic differences between facilities that over-report or underreport staffing in the OSCAR. DESIGN AND METHODS: We merged the 2002 Texas Nursing Facility Cost Report, the OSCAR for Texas facilities surveyed in 2002, and the 2003 Area Resource File. We eliminated outliers in the OSCAR using three decision rules, resulting in a final sample size of 941 of the total of 1,017 non-hospital-based facilities. We compared OSCAR and Medicaid Cost Report staffing measures for three staff types. We examined differences between facilities that over-reported or underreported staffing levels in the OSCAR by using logistic regression. RESULTS: Average staffing levels were higher in the OSCAR than in the Medicaid Cost Report data. The two sets of measures exhibited correlations ranging between 0.5 and 0.6. For-profit and larger facilities consistently over-reported registered nurse staffing levels. Factors associated with increased odds of over-reporting licensed vocational nursing or certified nursing assistant staffing were lower Medicare or Medicaid censuses and less market competition. Facility characteristics associated with over-reporting were consistent across different levels of over-reporting. Underreporting was much less prevalent. IMPLICATIONS: Certain types of facilities consistently over-report staffing levels. These reporting errors will affect the validity of consumer information systems, regulatory activities, and health services research results, particularly research using OSCAR data to examine the relationship between staffing and quality. Results call for a more accurate reporting system.

Where should Momma go? Current nursing home performance measurement strategies and a less ambitious approach.

BACKGROUND: Nursing home performance measurement systems are practically ubiquitous. The vast majority of these systems aspire to rank order all nursing homes based on quantitative measures of quality. However, the ability of such systems to identify homes differing in quality is hampered by the multidimensional nature of nursing homes and their residents. As a result, the authors doubt the ability of many nursing home performance systems to truly help consumers differentiate among homes providing different levels of quality. We also argue that, for consumers, performance measurement models are better at identifying problem facilities than potentially good homes. DISCUSSION: In response to these concerns we present a proposal for a less ambitious approach to nursing home performance measurement than previously used. We believe consumers can make better informed choice using a simpler system designed to pinpoint poor-quality nursing homes, rather than one designed to rank hundreds of facilities based on differences in quality-of-care indicators that are of questionable importance. The suggested performance model is based on five principles used in the development of the Consumers Union 2006 Nursing Home Quality Monitor. SUMMARY: We can best serve policy-makers and consumers by eschewing nursing home reporting systems that present information about all the facilities in a city, a state, or the nation on a website or in a report. We argue for greater modesty in our efforts and a focus on identifying only the potentially poorest or best homes. In the end, however, it is important to remember that information from any performance measurement website or report is no substitute for multiple visits to a home at different times of the day to personally assess quality.

Prospects and pitfalls: use of the RAI-HC assessment by the Department of Veterans Affairs for home care clients.

PURPOSE: The U.S. Department of Veterans Affairs has adopted two functional assessment systems that guide care planning: one for nursing home residents (the Resident Assessment Instrument [RAI]) and a compatible one for home care clients (RAI-HC). The purpose of this article is to describe the RAI-HC (often referred to as the Minimum Data Set-Home Care or MDS-HC) and its uses and offer lessons learned from implementation experiences in other settings. DESIGN AND METHODS: We reviewed implementation challenges associated both with the RAI and the RAI-HC in the United States, Canada, and other adopter countries, and drew on these to suggest lessons for the Department of Veterans Affairs as well as other entities implementing the RAI-HC. RESULTS: Beyond its clinical utility, there are a number of evidence-based uses for the assessment system. The resident-level data can be aggregated and analyzed, and scales identify clinical conditions and risk for various types of negative outcomes. In addition, the data can be used for other programmatic and research purposes, such as determining eligibility, setting payment rates for contract care, and evaluating clinical interventions. At the same time, there are a number of implementation challenges the Department of Veterans Affairs and other organizations may face. IMPLICATIONS: Policy makers and program managers in any setting, including state long-term-care programs, who wish to implement an assessment system must anticipate and address a variety of implementation problems with a clear and consistent message from key leadership, adequate training and clinical support for assessors, and appropriate planning and resources for data systems.

Defining quality in assisted living: comparing apples, oranges, and broccoli.

PURPOSE: The purpose of this article is to discuss and describe various measures of quality, quality indicators, and uses of information on quality with specific reference to the role or purpose of assisted living. DESIGN AND METHODS: We reviewed a variety of major studies of assisted living quality. We elaborated models of assisted living based on differing goals or claims made for it by providers and policy makers. We then searched for available quality measures that might indicate whether assisted living was meeting those goals or living up to those claims. RESULTS: Any meaningful concept of "quality" must embrace a variety of dimensions, including quality of care, quality of life, the physical environment, and resident rights. The ability to use a multidimensional concept of quality is complicated by the lack of consensus, confusion, and disagreement among consumers, providers, and regulators about the role of assisted living. This disagreement significantly confounds the task of comparing quality among assisted living settings and between assisted living and other types of long-term care. IMPLICATIONS: We propose ways that researchers may compare quality along dimensions claimed to be intrinsic to assisted living as part of an effort to inform consumer information systems, quality monitoring and assurance systems, and policy-relevant research. Such comparisons would vary, depending on the intended use of the indicators and role defined for assisted living. However, all uses contain structural, process, and outcome quality indicators, including direct feedback from interviews with residents that go beyond satisfaction measures.

Effect of staff turnover on staffing: A closer look at registered nurses, licensed vocational nurses, and certified nursing assistants.

PURPOSE: We examined the effects of facility and market-level characteristics on staffing levels and turnover rates for direct care staff, and we examined the effect of staff turnover on staffing levels. DESIGN AND METHODS: We analyzed cross-sectional data from 1,014 Texas nursing homes. Data were from the 2002 Texas Nursing Facility Medicaid Cost Report and the Area Resource File for 2003. After examining factors associated with staff turnover, we tested the significance and impact of staff turnover on staffing levels for registered nurses (RNs), licensed vocational nurses (LVNs) and certified nursing assistants (CNAs). RESULTS: All three staff types showed strong dependency on resources, such as reimbursement rates and facility payor mix. The ratio of contracted to employed nursing staff as well as RN turnover increased LVN turnover rates. CNA turnover was reduced by higher administrative expenditures and higher CNA wages. Turnover rates significantly reduced staffing levels for RNs and CNAs. LVN staffing levels were not affected by LVN turnover but were influenced by market factors such as availability of LVNs in the county and women in the labor force. IMPLICATIONS: Staffing levels are not always associated with staff turnover. We conclude that staff turnover is a predictor of RN and CNA staffing levels but that LVN staffing levels are associated with market factors rather than turnover. Therefore, it is important to focus on management initiatives that help reduce CNA and RN turnover and ultimately result in higher nurse staffing levels in nursing homes.

Differences between newly admitted nursing home residents in rural and nonrural areas in a national sample.

PURPOSE: Previous research in specific locales indicates that individuals admitted to rural nursing homes have lower care needs than individuals admitted to nursing homes in urban areas, and that rural nursing homes differ in their mix of short-stay and chronic-care residents. This research investigates whether differences in acuity are a function of differences in resident payer status and occur for both individuals admitted for short stays, with Medicare as payer, and those needing chronic care. DESIGN AND METHODS: We used a representative 10% sample of national resident assessments (Minimum Data Set) for calendar year 2000 (N = 197,589). We conducted statistical analyses (means, percentages, and logistic regression) to investigate differences in Medicare and non-Medicare admissions to facilities in metropolitan and nonmetropolitan areas. RESULTS: Non-Medicare residents admitted to rural nursing facilities have lower acuity scores than non-Medicare residents admitted to metropolitan nursing homes. However, individuals admitted under Medicare were similar in rural and urban areas. IMPLICATIONS: Differences in resident acuity at admission among facilities in different locales were largely a function of lower acuity levels for individuals admitted to rural nursing homes for long-term or chronic care, although differences in Medicare census also played some role in facility-level differences in acuity. Other factors must be explored to determine why this lower acuity occurs and whether higher use of rural nursing homes by less impaired older persons meets their needs and preferences and represents good public policy.

Urban and rural differences in end-of-life pain and treatment status on admission to a nursing facility.

Individuals receiving end-of-life (EOL) care may have needs that are unrecognized or treated inappropriately. Yet, very little is known about differences in pain and special-care needs of EOL patients admitted to rural nursing facilities compared with urban nursing facilities, and whether the differing payer mix in urban and rural facilities affects the treatment ordered on admission. We examine a nationally representative sample of 6084 EOL patients upon admission to nursing homes to examine differences in diseases, pain assessments, and treatment orders. We found that rural EOL residents have higher rates of congestive heart failure, cancer, renal failure, and emphysema than urban EOL residents and are significantly more likely to report frequent pain, however, they are less likely to receive treatments such as IV medications, dialysis, and wound care.

Assisted living in rural America: results from a national survey.

CONTEXT: Expanding the availability of long-term care (LTC) services and making them more responsive to consumer preferences is an important goal, particularly for elderly people living in rural areas who tend to be older and have greater functional limitations but less access to the range of LTC options available in metropolitan areas. One option that has been growing in popularity is assisted-living facilities (ALFs). PURPOSE AND METHODS: This paper describes rural ALFs and compares them with metropolitan ALFs. Data were collected using a multistage sample design that yielded a nationally representative sample of ALFs. Telephone interviews were completed with administrators of 1,251 ALFs in 1998. FINDINGS: Nationwide, assisted living was largely administered by private payment, and there was an undersupply in rural areas. Compared with metropolitan ALFs, rural ALFs were smaller and less likely to offer the types of services and accommodations associated with the philosophy of assisted living. They were more likely to offer accommodations with little privacy, and while similar in the services they offered, rural ALFs were less likely to have nurses on staff, particularly licensed practical nurses. Moreover, they were less likely to offer a combination of high services and high privacy. Finally, rural ALFs charged lower prices than urban ALFs; however, the average price was still unaffordable for most elderly rural residents. CONCLUSIONS: These findings suggest that assisted living, as currently structured, will make only a marginal contribution to meeting the needs of frail elders in rural areas.

Medicare expenditures for residents in assisted living: data from a national study.

OBJECTIVE: To provide preliminary data on Medicare expenditures for assisted living facility (ALF) residents and to investigate whether ALF characteristics were related to Medicare expenditures for ALF residents. DATA SOURCES/STUDY SETTING: Data from the National Study of Assisted Living for the Frail Elderly conducted in 1998-1999. This analysis was restricted to the 40 percent of ALFs in that sample that adhered to the assisted living (AL) philosophy by offering more than minimal levels of services and privacy. This study involved the approximately 1,200 residents who remained in an ALF from baseline to follow-up data collection. Six months of postbaseline Medicare claims were acquired for 545 of these residents, who did not differ significantly from the larger sample. DATA COLLECTION: Baseline individual and facility data were collected in personal interviews with residents and a combination of personal and telephone interviews with facility staff. Medicare claims data were acquired from the Centers for Medicare and Medicaid Services. STUDY DESIGN: Cross-sectional analyses using logistic and ordinary least squares regression techniques were used to determine the relationships among individual and facility characteristics and Medicare utilization and expenditures. PRINCIPAL FINDINGS: On an annualized basis, AL residents incurred Medicare costs of approximately US dollars 4,800. Just less than 15 percent of AL residents accounted for over 75 percent of total Medicare costs. Both the likelihood of utilizing Medicare-covered services and the intensity of service use were largely unaffected by the characteristics of the ALF in which residents lived. Utilization was largely a function of individual characteristics. The only exception to this general finding was that those individuals who utilized services and resided in smaller ALFs had significantly lower average expenditures than did individuals in larger ALFs. CONCLUSIONS: These preliminary data imply that both the level and distribution of Medicare expenditures among ALF residents were similar to those among the general community-dwelling Medicare beneficiary population. No significant relationships were observed between ALF characteristics and Medicare expenditures, except the effect of facility size. This result may imply that how the AL industry eventually defines itself in terms of services and amenities, other than size, may have little impact on Medicare expenditures for ALF residents. However, this is a single, initial study, so caution must be exercised when considering the implications of these results.

Rurality and nursing home quality: results from a national sample of nursing home admissions.

OBJECTIVES: We examined differences in quality of care among nursing homes in locales of varying degrees of rurality. METHODS: We classified locales into 4 classes according to rurality. We analyzed a 10% sample of nursing home admissions in the United States in 2000 (n=198613) to estimate survival models for 9 quality indicators. RESULTS: For postacute admissions, we observed significant differences in rates of decline for residents in facilities in large towns compared with urban areas, but differences in quality were both negative and positive. Among admissions for long-term or chronic care, rates of decline in 2 of 9 quality areas were lower for residents in isolated areas. CONCLUSIONS: We observed significant differences in a number of quality indicators among different classes of nursing home locations, but differences varied dramatically according to type of admission. These differences did not exhibit the monotonicity that we would have expected had they derived solely from rurality. Also, quality indicators exhibited more similarities than differences across the 4 classes of locales. The results underscore the importance, in some instances, of emphasizing the effects of specific settings rather than some continuum of rurality and of moving beyond the assumption that nursing home residents constitute a homogeneous population.

Effects of facility characteristics on departures from assisted living: results from a national study.

PURPOSE: Assisted living is an increasingly important residential setting for the frail elderly person. How often and why residents leave such facilities are important issues for consumers, for clinicians advising frail patients on their options for living arrangements, and for policymakers. This research investigated the impact of facility and individual characteristics on residents' departures from assisted living. DESIGN AND METHODS: This research is based on data on 1,483 residents in a nationally representative sample of 278 assisted living facilities (ALFs). Analyses of these data from 1998 and 1999 especially focused on those residents who left a study ALF between baseline and follow-up data collection. Multinomial logit models were estimated to investigate the impact of facility and individual factors on residents' status at follow-up. RESULTS: Over three quarters of those leaving their baseline ALF did so because they needed more care. The multivariate analyses indicated that poorer functional status and being married affected residents' relative odds of death before follow-up. Moving to another setting, other than a nursing home, was more likely for residents in for-profit ALFs. Functional status, cognitive status, and the presence of a full-time RN affected residents' odds of moving from an ALF to a nursing home. IMPLICATIONS: Both facility-level and individual-level factors affected residents' relative odds of leaving an ALF. The findings with the most potentially interesting policy implications are those concerning the factors that affected residents' relative likelihoods of entering a nursing home.