Factors for Accessing a Medical Home Vary Among CSHCN from Different Levels of Socioeconomic Status

Purpose The purpose of this research study was to identify factors that are associated with receiving care in a medical home for children with special health care needs (CSHCN) and to identify how these factors vary among different socioeconomic levels. Methods Data were obtained from the National Survey of Children with Special Health Care Needs, 2000–2002. Access to a medical home was derived using an algorithm. This survey analysis also included demographic characteristics, geographical location of household, severity of condition, and social factors. Multiple logistic regression models were constructed for socioeconomic status (SES) levels defined by federal poverty level (FPL): <133%; 133–199%; 200–299%; ≥300%. Results Age group was significant in all but the 200–299% of FPL stratum. Severity of condition was significant in all strata. Race was significant in all but the ≥300% stratum. Maternal education was borderline significant in the lowest and highest strata. Insurance type/status was significant in all but the 133–199% of FPL stratum. Geographical location was significant in the lowest and highest strata. The language of the interview was only significant in the lowest stratum. The relationship of the respondent to the child was significant in the middle two strata. The total number of adults in the household was significant in the highest stratum, and the total number of children in the household was significant in the 200–299% of FPL stratum. Conclusions Factors affecting access to a medical home differed among socioeconomic groups. Future research should explore the CSHCN population by income groups to better serve this population.     

Post-acute care for children with special health care needs

Background

Almost all studies of post-acute care (PAC) focus on older persons, frequently those suffering from chronic health problems. Some research is available on PAC for the pediatric population in general. However, very few studies focus on PAC services for children with special health care needs (SHCN).

Medicaid managed care and the unmet need for mental health care among children with special health care needs

OBJECTIVE: To determine the association between Medicaid managed care pediatric behavioral health programs and unmet need for mental health care among children with special health care needs (CSHCN). DATA SOURCE: The National Survey of CSHCN (2000-2002), using subsets of 4,400 CSHCN with Medicaid and 1,856 CSHCN with Medicaid and emotional problems. Additional state-level sources were used. STUDY DESIGN: Multilevel models investigated the association between managed care program type (carve-out, integrated) or fee-for-service (FFS) and reported unmet mental health care need. DATA COLLECTION/EXTRACTION METHODS: The National Survey of CSHCN conducted telephone interviews with a sample representative at both the national and state levels. PRINCIPAL FINDINGS: In multivariable models, among CSHCN with only Medicaid, living in states with Medicaid managed care (odds ratio [OR]=1.81; 95 percent confidence interval: 1.04-3.15) or carve-out programs (OR=1.93; 1.01-3.69) were associated with greater reported unmet mental health care need compared with FFS programs. Among CSHCN on Medicaid with emotional problems, the association between managed care and unmet need was stronger (OR=2.48; 1.38-4.45). CONCLUSIONS: State Medicaid pediatric behavioral health managed care programs were associated with greater reported unmet mental health care need than FFS programs among CSHCN insured by Medicaid, particularly for those with emotional problems.     

State Policy Environment and Delayed or Forgone Care Among Children with Special Health Care Needs

Objective To evaluate if children with special health care needs (CSHCN) residing in states with more generous public insurance programs were less likely to report delayed or forgone care. Methods We used multilevel modeling to evaluate state policy characteristics after controlling for individual characteristics. We used the 2001 National Survey of CSHCN for individual-level data (N = 33,317) merged with state-level data, which included measures of the state’s public insurance programs (Medicaid eligibility and enrollment, spending on Medicaid, SCHIP and Title V, and income eligibility levels), state poverty level and provider supply (including pediatric primary care and specialty providers). We also included a variable for state waivers for CSHCN requiring institutional level care. Results Delayed or forgone care significantly varied among CSHCN between states, net of individual characteristics. Of all the state characteristics studied, only the Medicaid income eligibility levels influenced the risk of experiencing delayed care. CSHCN living in states with higher income eligibility thresholds or more generous eligibility levels were less likely to experience delayed care (OR 0.89(0.80,0.99); P ≤ 0.05). Conclusions By analyzing child health policy in the context of individual characteristics that may place a child at risk for delayed care, we determined that improving Medicaid eligibility levels improved the process of care for CSHCN.     

Integrating community health workers into a community hearing health collaborative to understand the social determinants of health in children with hearing loss

BackgroundChildren with hearing loss (HL) require coordination of care to navigate medical and social services. Strong evidence supports the role of community health workers (CHWs) to identify and address social barriers.ObjectiveThe goal of this study was to evaluate the impact of integrating CHWs into the medical teams of children with HL and identify the social needs associated with their caregivers at a large urban hospital center.MethodsA retrospective chart review was conducted for 30 children with HL whose caregivers enrolled in a CHW program between August 1, 2017 and December 31, 2019. Baseline demographic data were collected, including social circumstances such as food and housing insecurity, status of social security supplemental income (SSI), and need for referral to early intervention (EI) or preschool/school services. Caregivers were assessed for confidence in self-management; baseline distress level was measured via a distress thermometer.ResultsOf the 30 charts reviewed, 93% demonstrated social needs including food insecurity (24%) and educational service needs (45%). Eighty-seven percent of caregivers reported a sense of control over the child's condition, yet 73% reported a stress level of four or greater on the distress thermometer scale. At 3 months follow-up, 70% of patients completed referrals; a significant number of patients had obtained hearing aids and cochlear implants compared to baseline (p = 0.017).ConclusionsCaregivers of children with HL face multiple social obstacles, including difficulties connecting to educational and financial resources. CHWs are instrumental in identifying social needs and connecting caregivers to services.     

Differentiating Subgroups of Children with Special Health Care Needs by Health Status and Complexity of Health Care Needs

Objectives Our objective is to use the Children with Special Health Care Needs (CSHCN) Screener to identify subgroups of CSHCN differentiated by health status and complexity of need. Methods Data are from the National Survey of Children with Special Health Care Needs, 2001 and the National Survey of Children’s Health, 2003 (conducted by the Maternal and Child Health Bureau and the National Center for Health Statistics); and the 2001 and 2002 Medical Expenditure Panel Survey, conducted by the Agency for Healthcare Research and Quality. A broad array of variables measuring health status, complexity of need, and related issues are examined by subgroupings of CSHCN. Results Relative to other CSHCN, CSHCN with functional limitations or who qualify on more CSHCN Screener items have poorer health status and more complex health care needs. They more often experience a variety of health issues; their insurance is more often inadequate; the impact of their conditions on their families is higher; and their medical costs are higher. Conclusion In the absence of information on specific conditions, health status, or complexity of need, the CSHCN Screener alone can be used to create useful analytic subgroups that differ on these dimensions. The proposed subgroups, based on the type or number of CSHCN screening criteria, differentiate CSHCN by health status and complexity of health care needs, and also show differences in the impact of their conditions on their families, costs of their medical care, and prevalence of various health problems. Certification of ethical research: This material presents a secondary data analysis of a deidentified data set. Human subjects review was therefore not required for this study.     

Managed Care Organizational Characteristics and Health Care Use among Children with Special Health Care Needs

Objective. To examine the relationship between features of managed care organizations (MCOs) and health care use patterns by children.
Data Sources. Telephone survey data from 2,223 parents of children with special health care needs, MCO-administrator interview data, and health care claims data.
Study Design. Cross-sectional survey data from families about the number of consequences of their children's conditions and from MCO administrators about their plans' organizational features were used. Indices reflecting the MCO characteristics were developed using data reduction techniques. Hierarchical models were developed to examine the relationship between child sociodemographic and health characteristics and the MCO indices labeled: Pediatrician Focused (PF) Index, Specialist Focused (SF) Index, and Fee-for-Service (FFS) Index, and outpatient use rates and charges, inpatient admissions, emergency room (ER) visits, and specialty consultations.
Data Collection/Extraction Methods. The telephone and MCO-administrator survey data were linked to the enrollment and claims files.
Principal Findings. The child's age, gender, and condition consequences were consistent predictor variables related to health care use and charges. The PF Index was associated with decreased outpatient use rates and charges and decreased inpatient admissions. The SF Index was associated with increased ER visits and decreased specialty consultations, while the FFS Index was associated with increased outpatient use rates and charges.
Conclusion. After controlling for sociodemographic and health characteristics, the PF, SF, and FFS indices were significantly associated with children's health care use patterns.     

A Medical Home Center: Specializing in the Care of Children with Special Health Care Needs of High Intensity

Objective Children with special health care needs (CSHCN) benefit from a medical home, however, a subset, those children with high intensity needs, have medical and social service issues beyond the capacity of most primary care practices. We describe a novel medical home center that is designed to meet the needs of children with special health care needs of high intensity (CSHCN-HI). Model of care The medical home center, U Special Kids (USK) is located at the University of Minnesota and affiliated with a tertiary medical center. USK serves CSHCN-HI throughout the state of Minnesota and, because of state supported funding for the program, children have access to the program regardless of their health insurance coverage. The team is expert at gathering an overall perspective of the child’s needs, identifying gaps, accessing services and weaving together the plethora of disparate services, agencies and providers. A major goal of this model is to transition care from USK to a primary care medical home within the child’s community. Transition is more likely to occur optimally once the child’s complex needs are organized, the family is trained, adequate management resources are in place, and the intensity of care coordination needs are reduced. Conclusions We propose that, in addition to a primary care medical home, CSHCN-HI benefit from a unique medical home center that can provide sufficient resources and expertise to organize their complex care coordination needs. Medical home centers, designed specifically to manage the care of children with complex high intensity medical and care coordination needs, have the potential to reduce excess health care utilization and improve patient outcomes by providing this group of children with customized, accessible and integrated services.     

Utilization of Children with Special Health Care Needs (CSHCN) Screener? by O‘ahu's Pediatricians

O‘ahu''s primary care physicians are in the process of implementing the Patient-Centered Medical Home (PCMH) model. The Medical Home Task Force recommends the implementation of the Children with Special Health Care Needs (CSHCN) Screener© as one of the two quality improvement programs that must be completed by each participating physician. This study sought to find how many pediatricians practice population health management and to determine barriers for incorporating population health management and care registries into practices.An online survey of 55 pediatricians in Hawai‘i was conducted between January 10, 2012 and March 10, 2012. The survey contained questions regarding knowledge and use of population health management and investigated the utilization rate of the Screener©. This survey provides baseline data on the implementation of this recommended screener, and informs the process that will be necessary to ensure maximal adoption of recommendations.Sixty percent of the survey participants have not incorporated population health management into their routine practice. Twenty three percent did not have knowledge of population health management and 85% did not use a chronic disease registry. As of August 2011, 95% had not screened their patients with the Screener©. Reasons included not having heard of the Screener© and never having considered using a systematic process to ask patients to assess their health.Based on results, there are important educational goals that need to be accomplished in order for Hawai‘i''s physicians to transform their practices into effective PCMHs. Physicians will likely need instructional and monetary support to effectively change their practices into PCMHs.     

Children Who Are Medically Fragile in North Carolina: Using Medicaid Data to Estimate Prevalence and Medical Care Costs in 2004

Objectives: The purpose of this paper is to demonstrate a method of using medical insurance paid claims and enrollment data to estimate the prevalence of selected health conditions in a population and to profile associated medical care costs. The examples presented here use North Carolina Medicaid data to produce estimates for children ages 0–19 who are medically fragile. These children with serious health conditions are a small subset of all children with special health care needs. Methods: The children who are medically fragile were identified through selected procedure and durable medical equipment codes. We profiled the expenditures for all medical services provided to these children during 2004. Results: 1,914 children ages 0–19 enrolled in Medicaid were identified as medically fragile (0.22 percent). The amount paid by Medicaid for these children during 2004 for all medical services was $133.8 million, or $69,906 per child. By comparison, the average expenditure by Medicaid during 2004 for a randomly selected group of children receiving well-child care visits was $3,181 per child. The $133.8 million of Medicaid expenditures for the children who are medically fragile represents 6.8 percent of the nearly $2 billion spent by Medicaid in 2004 for all medical services for all children ages 0–19. Conclusions: This study presents a standard methodology to identify children with specific health conditions and describe their medical care costs. Our example uses Medicaid claims and enrollment data to measure prevalence and costs among children who are medically fragile. This approach could be replicated for other health care payer data bases and also in other geographic areas.     

Emergency department use among Michigan children with special health care needs: an introductory study

OBJECTIVE: To describe patterns of emergency department (ED) use among children dual-enrolled in Medicaid and Michigan's Children's Special Health Care Services (CSHCS). DATA SOURCES: Individual claims and enrollment data from Michigan's Medicaid and CSHCS programs for the period January 1, 1998, to June 30, 1999. Claims data were linked with eligibility data and then used to develop a 100 percent sample of claims for individuals enrolled in both Medicaid and CSHCS. STUDY DESIGN: Poisson regression analysis was used to examine the rate of ED use for dual-enrolled children. A time-varying hazard analysis was also used to examine the impact of changes over time. The key variables were gender, age, race, county of residence, Medicaid eligibility category, and qualifying diagnosis. PRINCIPAL FINDINGS: Dual-enrolled children under one year of age, and those with qualifying diagnoses of anemia, hemophilia, asthma, epilepsy, and juvenile diabetes displayed especially high rates of ED use. Significant geographic variation in ED use remained after controlling for qualifying diagnoses, race/ethnicity, and other factors. African Americans displayed higher rates of ED utilization than non-Hispanic whites. Supplemental Security Income (SSI) recipients demonstrated higher utilization than other groups. CONCLUSIONS: Children dually enrolled in CSHCS and Medicaid face diverse challenges of both poverty and chronic illness. Differences in patterns of use highlight the importance, but also the difficulty, of developing systems of care to manage complex chronic conditions in low-income populations.     

Racial/ethnic health disparities among children with special health care needs in Boston,Massachusetts

BackgroundLittle is known about the factors that contribute to racial/ethnic disparities among children with special health care needs (CSHCN).ObjectiveTo quantify the contributions of determinants of racial/ethnic disparities in health and health care among CSHCN in Boston, Massachusetts.MethodsA sample of 326 Black, Latino, and white CSHCN was drawn from the Boston Survey of Children's Health, a city-wide representative sample of children. The study implemented Oaxaca–Blinder-style decomposition techniques to examine the relative contributions of health resources and child-, family-, and neighborhood-level factors to disparities in four outcomes: health status, barriers to medical care, oral health status, and utilization of preventive dental care.ResultsWhite CSHCN had a greater likelihood of having very good/excellent health and oral health and were less likely to experience barriers to care than Black CSHCN. Compositional differences on predictors explained 63%, 98%, and 80% of these gradients, respectively. Group variation in household income, family structure, neighborhood support, and exposure to adverse childhood experiences accounted for significant portions of the Black–white gaps in health and access. White CSHCN were also more likely to have very good/excellent health and oral health compared to Latino CSHCN. Differences on predictors accounted for about 86% and 80% of these gaps, respectively. Household income, adverse childhood experiences, and household language emerged as significant determinants of Latino–white disparities.ConclusionsRacial/ethnic health disparities among CSHCN are explained by relatively few determinants. Several of the contributing factors that emerged from the analysis and could be targeted by public health and policy interventions.     

The National Survey of Children's Health: A New Data Resource

CONTEXT: Federal and state maternal and child health programs are responsible for promoting and improving the health and well-being of children. To support achievement of this goal, the federal Maternal and Child Health Bureau (MCHB) in partnership with the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention has developed a new survey that will provide uniform national and state data on the health and well-being of children, as well as the characteristics of their families and neighborhoods. PURPOSE: The National Survey of Children's Health was designed to produce reliable and representative state- and national-level estimates for Healthy People 2010 national prevention objectives, for each state's Title V needs assessment, and for Title V program planning and evaluation. In addition, it will provide a new data resource for researchers, advocacy groups, and other interested parties. It is anticipated that this survey will be repeated periodically, making trend analysis possible. METHODS: This survey was conducted using the State and Local Area Integrated Telephone Survey (SLAITS) mechanism, which shares the random-digit-dial sampling frame of the National Immunization Survey (sponsored by the National Immunization Program and NCHS). Using the SLAITS platform, interviews on approximately 2000 children were conducted in each state and the District of Columbia. The parent or guardian most knowledgeable about the child completed a battery of questions on health and development, health insurance coverage, access to care, utilization of health care services, presence of a medical home, family functioning, parental health, and neighborhood characteristics. Data collection began in January 2003 and continued through April 2004. Summary reports and electronic data files will be available to the public by early 2005. CONCLUSION: This is the second state and national survey jointly completed by MCHB and NCHS. It is designed to complement the 2001 National Survey of Children with Special Health Care Needs by providing data on the health of the general child population.     

Employment change and the role of the medical home for married and single-mother families with children with special health care needs

One in five U.S. households with children has at least one child with a special health care need (USDHHS, 2004). Like most parents, those with children with special health care needs struggle to balance child-rearing responsibilities with employment demands. This research examines factors affecting married parents' and single-mother's employment change decisions focusing specifically on whether having a medical home influences these decisions. This study includes 38,569 children with special health care needs from birth through age 17 surveyed in the 2005–2006 National Survey of Children with Special Health Care Needs. The employment model is estimated using multinomial logistic regression with the choice of a parent to maintain their current level of employment, reduce work hours, or stop working as the dependent variable. Independent variables are those characterizing the needs of the child, the resources of the family, and the socio-demographic characteristics of the family. Components of the medical home variable include: 1) having a usual source of care; 2) care provided is “family centered”; 3) receipt of care coordination services; and 4) receipt of needed referrals. Half of the children in our sample met criteria in all four facets. If the child has a medical home, the relative risk of a parent choosing to cut hours rather than not change hours decreases by 51%. The relative risk of choosing to stop working rather than not change hours decreases by an estimated 64%. Care coordination services significantly reduce the odds of changing employment status. Our results suggest that the medical home is a moderating factor in parental decisions concerning change in employment status.     

How Children with Special Health Care Needs Affect the Employment Decisions of Low-Income Parents

OBJECTIVES: To better understand the impact of having a child with special health care needs (CSHCN), on low-income parents' employment decisions. METHODS: Using data from the 1999 and 2000 National Health Interview Survey (NHIS), we estimate multivariate statistical regressions (logit and tobit models) to estimate the relationship between having a CSHCN and the likelihood of employment and hours of employment for a sample-of low-income single parents. RESULTS: Controlling for differences in demographic and family characteristics, we find no significant association between having a CSHCN and the probability of work or the number of hours worked among low-income single-parent families. Separate analysis of different dimensions of special health care needs shows that parents of children with activity limitations are significantly less likely to work and work fewer hours. This result does not hold true for the group of children defined based on elevated or special service use, or for the group of children with specific chronic conditions. CONCLUSIONS: These results indicate that only a specific subset of children with special needs present difficulties for low-income parents' work. This suggests that policies to help low-income single parents of children with disabilities move into work should target this specific subset of children with special health care needs.     

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

OBJECTIVES: To extend what is known about parent reports of their child's need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). METHODS: Using data from a 1998-1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. RESULTS: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. CONCLUSIONS: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.     

Response shift in the measurement of quality of life in hearing impaired adults after hearing aid fitting

Reason for the study: Response shift is the change in the meaning of one's self-evaluation of a target construct, like quality of life (QOL). The objective of this study was to investigate whether response shift in the measurement of generic and specific QOL occurred in persons with a relatively mild health condition. For this purpose hearing impairment was used as a research model. Major findings: Response shift effects were observed in the scores on the dimensions of hearing related QOL. In the scores on overall hearing related QOL, and in the scores on the generic control items, no response shift occurred. Conclusions: This study showed that response shift effects can take place in a relatively mild condition as well. The occurrence of response shift in QOL ratings over time could have large implications for the estimation of the effectiveness of medical interventions and for the use of these estimations in cost-effectiveness analyses. After a successful treatment the conventional change could be an underestimation of the effectiveness of the treatment, although it has also been argued that psychological adaptation is a welcome capacity of human beings, and that then-test changes do no justice to this capacity.