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.     

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.     

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.     

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.     

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.     

Delayed Care and Unmet Needs among Health Care System Users: When Does Fiduciary Trust in a Physician Matter?

Objectives. To examine whether fiduciary trust in a physician is related to unmet health care needs and delayed care among patients who have a regular physician, and to investigate whether the relationships between trust and unmet health care needs and delays in care are attenuated for disadvantaged patients who face structural obstacles to obtaining health care.
Data Sources/Study Setting. The 1998–1999 Community Tracking Study (CTS) Household Survey, a cross-sectional sample representative of the U.S. noninstitutionalized population. This study analyzes adults who usually see the same physician for their health care ( n =29,994).
Study Design. We estimated logistic regression models of the association of trust with unmet health care needs and delayed care. We tested interactions between trust and barriers to obtaining care, including minority race/ethnicity, poverty, and the absence of health insurance. Control variables included patients' sociodemographic characteristics, health status, satisfaction with the available choice of primary physicians, and the number of physician visits during the last year.
Principal Findings. Patients' fiduciary trust in a physician is negatively associated with the likelihood of reporting delayed care and unmet health care needs among most patients. Among African Americans, Hispanics, the poor, and the uninsured, however, fiduciary trust is not significantly associated with the likelihood of delayed care. For unmet needs, only the uninsured have no significant association with trust.
Conclusions. Results show that trust is associated with improved chances of getting needed care across most subgroups of the population, although this relationship varies by subpopulation.     

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.     

Prevalence of Children with Special Health Care Needs in Metropolitan and Micropolitan Statistical Areas in the United States

Objectives We estimate the prevalence of children with special health care needs (CSHCN) in 70 metropolitan and four micropolitan statistical areas across the United States. Methods The data are from the 2001 National Survey of CSHCN, which was sponsored by the Maternal and Child Health Bureau and conducted by the National Center for Health Statistics. Prevalence estimates were generated for 74 metropolitan and micropolitan statistical areas (M/MSAs) and 45 individual counties that were represented by at least 1,000 children in the sample. To generate the estimates, the child-level sample weights (representative at the national and state level) were recalibrated within each M/MSA and county to match Census 2000 counts of the child population by age, sex, and Hispanic ethnicity. Results M/MSA-level and county-level prevalence of CSHCN are compared with national- and state-level prevalence, and within M/MSAs and counties, prevalence is reported by age, sex and race/ethnicity. Most, but not all, M/MSA- or county-level prevalence estimates did not differ significantly from state-level estimates. Some M/MSAs and counties that did not differ from their states in overall prevalence of CSHCN did show some differences in prevalence for certain demographic subgroups. Conclusions Metropolitan health departments and Maternal and Child Health agencies that serve urban areas may find these new small area estimates useful for program planning purposes. This study demonstrates the importance of assessing whether state estimates may approximate local area estimates of the prevalence of CSHCN.     

Financial Burden for Families of Children with Special Health Care Needs

Objectives: We describe family finance-related burden experienced by families with children with special health care needs (CSHCN). The paper further seeks to describe correlates of family financial burden. Methods: We examined correlates of family finance-related burden using multivariate methods and the National Survey of CSHCN, a nationally representative cross-sectional survey of CSHCN. We also examined state-level correlations. Results: Fully 40% of families with CSHCN, or 3,746,000 families nation-wide, experience financial burden related to their child’s condition. Experiencing a finance-related problem is negatively associated with Maternal and Child Health Bureau (MCHB) indicators and positively associated with poor-child health status. States that better meet MCHB indicators generally have lower levels of family finance-related problems. Conclusions: Families with CSHCN have high levels of finance-related family problems. Development of appropriate systems of care appears to offer a mechanism for alleviating the financial burdens of these families.     

Network Supports and Resiliency among U.S. Military Spouses with Children with Special Health Care Needs

Understanding how military families who have children with special health care needs (CSHCN) successfully cope in the context of exceptional demands of the military lifestyle can inform scholarship, policy, and practice to the benefit of families. Using data from 775 female civilian parents (mothers serving as Key Spouses) married to active duty Air Force members, this study examined differences on dimensions of network support and spouse resiliency between mothers who do and do not have CSHCN, as well as the relative contribution of formal and informal network support to variation in self-reports of resiliency among mothers with CSHCN. Mothers with CSHCN experience significantly less formal and informal network support than their counterparts. Despite this, they reported equivalent overall resiliency, with lower perceived resiliency on only one of four resiliency outcomes. More formal and informal network support was generally associated with higher resilience. Implications for policy, practice, and research are discussed.     

Hardships of Raising Children With Special Health Care Needs (A Commentary)

Providing health care services for youngsters with special health care needs (SHCN) requires understanding of the medical circumstances that impact on the particular youngster, as well as an increased awareness and sensitivity to their particular family setting, and the issues that impact on the child, his/her parents, and siblings. To this end a review was carried out regarding the variable affects on these youngsters, such as poverty, parental, and family issues, as well as considerations of who is at risk for SHCN and demographics of individuals with SHCN who have unmet health needs. The particular need for dental services, the health service most commonly reported as needed, but not received, is highlighted.     

>Parents' Perception of and Satisfaction with the Eligibility Assessment of their Children with Special Needs

Thirty parents of children approximately four to five years of age were asked about their perceptions of and satisfaction with the use of a traditional, norm-referenced test and an activity-based assessment in the eligibility assessment of their children with special needs. Findings revealed that parents perceived the activity-based assessment to be significantly more able to (1) provide them with information about their children's typical performance, (2) address more of their measurement questions and concerns, and (3) measure more of their children's functional skills than a traditional norm-referenced test. In addition, parents were significantly more satisfied with the activity-based assessment in (1) providing them with opportunities to make suggestions about the testing, (2) valuing their input in the assessment process, and (3) making them feel more comfortable when the assessment procedures and purposes were explained to them throughout the assessment process.     

>Parents’ Perception of and Satisfaction with the Eligibility Assessment of their Children with Special Needs

Thirty parents of children approximately four to five years of age were asked about their perceptions of and satisfaction with the use of a traditional, norm‐referenced test and an activity‐based assessment in the eligibility assessment of their children with special needs. Findings revealed that parents perceived the activity‐based assessment to be significantly more able to (1) provide them with information about their children's typical performance, (2) address more of their measurement questions and concerns, and (3) measure more of their children's functional skills than a traditional norm‐referenced test. In addition, parents were significantly more satisfied with the activity‐based assessment in (1) providing them with opportunities to make suggestions about the testing, (2) valuing their input in the assessment process, and (3) making them feel more comfortable when the assessment procedures and purposes were explained to them throughout the assessment process.     

Social HMOs and Other Capitated Arrangements for Children with Special Health Care Needs

Objective: Children with special health care needs are increasingly enrolling in managed care arrangements. However, existing managed care organizations, including traditional HMOs, are often poorly suited for caring for this population. In the adult health care area, new managed care entities, called Social HMOs (S/HMO) and Programs for the All-inclusive Care for the Elderly (PACE), have been created to integrate health and health-related services for chronically ill and disabled adults. We describe these models and assess their potential for serving children with special health care needs. Method: We reviewed the literature on managed care for children with special health care needs and evaluation findings from the S/HMO and PACE models for the elderly. Results: Evaluations of the S/HMO and PACE models have yielded mixed findings. Some of the more positive accomplishments include lower use and expenditures for long-term care services compared to other demonstration projects, greater integration of primary care physicians in decision making concerning long-term care, and improved management of transitions between care levels. On the negative side, start-up has been slow, prospective members have been hesitant to enroll, intermittent and sometimes frequent operating deficits have emerged, no discernible positive effects on health or social outcomes are apparent, and no significant overall savings have emerged. Conclusions: With mixed results so far, caution is required in applying these or similar models for vulnerable child populations. However, given the inadequacies of traditional managed care for this population, we believe experimentation with new models of care that integrate health and health-related services is important. Such experimentation should be fostered only to the extent that the models are carefully designed and then implemented in a manner that protects the interests of children with special health care needs.     

Unmet Health Care Needs Among Children with Special Health Care Needs Enrolled in Tricare

TRICARE provides health care benefits to nearly two million children of active duty, retired, National Guard, and reserve service members. Child health advocates and congressional reports have raised questions regarding the adequacy access to care for children with military health benefits, particularly children with special health care needs (CSHCN). The objective of this study was to compare the health care experiences of CSHCN in TRICARE with those of CSHCN with other sources of health insurance. A cross-sectional analysis comparing unmet health care needs among CSHCN with TRICARE versus CSHCN with other sources of health insurance using nationally representative data from three years of the National Survey of Children’s Health (NSCH), 2016-2018. The NSCH includes a broad range of questions related to child health and health care to provide national level estimates, and the data allow for comparisons between insurance coverage groups and TRICARE. The survey data contain responses from over 100,000 parents or primary caregivers (parents) of children, representative of over 73 million children annually. This includes 804 children who were representative of approximately 367,000 CSHCN covered by TRICARE annually. Children with special health care needs. Overall, 21 percent (95% CI 19-24 percent) of parents of children covered by TRICARE reported their child had a special health care need, compared to 16 percent of children with commercial insurance (95% CI 15-16 percent) and 24 percent of children with public insurance (95% CI 23-25 percent). Eight percent of parents of CSHCN covered by TRICARE (95% CI 4-16 percent) reported any unmet health care needs in the prior 12 months, compared to 4 percent of CSHCN with private insurance (95% CI 4-5 percent) and 9 percent of CSHCN with public insurance (95% CI 8-11 percent). Among specific needs, 3 percent or fewer CSHCN covered by TRICARE had unmet needs for medical, dental, vision, hearing, or mental health care. Similarly, 5 percent or fewer reported difficulty or delays in getting services because of eligibility for coverage of the service, availability in the area, difficulty in getting an appointment, or cost. About 11 percent of parents of CSHCN covered by TRICARE reported usually or always being frustrated in getting needed services for their child during the prior 12 months, compared to 4 percent of those with private insurance and 9 percent of those with public insurance. About 12 percent of parents of CSHCN covered by TRICARE reported problems with paying for their child’s health care needs in the prior 12 months, compared to 23 percent of those with private insurance and 8 percent of those with public insurance. TRICARE is largely meeting the needs of the CSHCN for whom it provides benefits, but there are opportunities for improvement. CSHCN in TRICARE face higher rates of unmet needs than privately insured children, and their parents face higher levels of frustration in getting needed services. TRICARE should continue to work with families of CSHCN to identify specific unmet needs and sources of frustration with getting needed services.     

Immunizations in Children with Special Health Care Needs in a Medical Home Model of Care

Objective To assess whether a model of care with augmented services within an existing medical home could improve immunization rates for Children with Special Health Care Needs (CSHCN) and to evaluate the influence of family and practice characteristics on these children’s immunization rates. Method Participants were six general pediatric practices, CSHCN, and their families. Enhancements were added to the medical home for CSHCN, including additional nurse practitioner time. A prospective survey and chart review of volunteer families was made in 1998 repeating the chart review in 2000. Results The immunization rates of CSHCN in the practices before the intervention was 83.4% for DTaP, polio and MMR and 80% if HIB and HepB were added. The intervention did not improve these already high rates. In regression models, children with late onset disorders were more likely NOT to be up-to-date (UTD) by 2 years of age (OR 3.29). CSHCN cared for by non-birth parents and CSHCN whose family incomes were greater than $40,000 per year were also more likely NOT to be UTD (OR 3.81, 2.75 respectively) as were patients of providers not satisfied with any aspect of serving patients (OR 3.29). Conclusions In these practices already committed to a medical home model of care for CSHCN, immunization rates were at or above state and national averages before any intervention took place. Some groups of patients among these CSHCN were more likely to be delayed with immunizations, including those with late onset disorders and those with high family incomes.