Effects on household income and earnings from chronic kidney disease of non-traditional origins: PREP project findings from Chichigalpa, Nicaragua.

OBJECTIVE: Our purpose with this study is to examine the socioeconomic outcomes associated with chronic kidney disease not related to well-known risk factors (CKDnt) in four communities in Chichigalpa, Nicaragua that are home to a substantial number of sugarcane workers. METHODS: We employed a cluster-based systematic sampling design to identify differences in outcomes between those households affected directly by CKDnt and those that are not. RESULTS: Overall, we find that approximately one-third of households surveyed had a household member diagnosed with CKDnt. 86% of CKDnt households reported that the head of the household had been without work for the last 6 months or more, compared with 53% of non-CKDnt households. Non-CKDnt households took in more than double the earnings income on average than CKDnt households ($C52 835 and $C3120, respectively). Nonetheless, on average, CKDnt households' total income exceeded that of non-CKDnt households due to Nicaragua's national Instituto Nicaraguense de Seguridad Social Social Security payments to CKDnt households, suggestive of a substantial economic burden on the state resulting from the disease. Households headed by widows or widowers who are widowed as a result of CKDnt demonstrate distinct deficits in total income when compared with either non-widowed households or to households widowed by causes other than CKDnt. CONCLUSIONS: Despite strong similarities in terms of demographic characteristics and despite residing in the same communities with similar access to the available resources, households experiencing CKDnt exhibit distinct and statistically significant differences in important socioeconomic outcomes when compared to non-CKDnt households.

Medicaid personal care services for children with intellectual disabilities: what assistance is provided? When is assistance provided?

We report on the nature and timing of services provided to children with an intellectual disability (ID) identified by a new comprehensive assessment and care planning tool used to evaluate children's needs for Medicaid Personal Care Services (PCS) in Texas. The new assessment procedure resulted from a legal settlement with the advocacy community. Participants in the study were 1,109 children ages 4-20 with an intellectual disability diagnosis who were assessed between January and April of 2010. The need for assistance is higher on Saturday and Sunday, when school services are not available. We report differences in service patterns for children who vary in ID severity. Finally, we consider the implications of our results for policies and programs that serve families with children with an ID.

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.

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.

Modeling caregivers' perceptions of children's need for formal care: physical function, intellectual disability, and behavior.

BACKGROUND: Like most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request. OBJECTIVES/HYPOTHESES: This research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers. METHODS: The data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument. RESULTS: The results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care. DISCUSSION: Much of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.