Abstract
Objectives:
Parents of Children with Special Health Care Needs (CSHCN) report that private insurance is less adequate than public health coverage. Parents of CSHCN with emotional, behavioral, or developmental problems (EBDPs) may perceive private insurance to be especially inadequate due to higher need for a wider array of non-medical services and supports. This study’s objective is to assess differences in parent ratings of insurance adequacy for public versus private health coverage between non-CSHCN, CSHCN, and CSHCN with EBDPs.
Methods:
This study pooled publicly available data from the 2016 through 2019 National Survey of Children’s Health (NSCH). Multivariable fixed effects logistic regression models estimated the association between insurance type, CSCHN and EBDP status, and parent ratings of their child’s insurance adequacy. Marginal effects were calculated for insurance type, CSHCN and EBDP status, and their interactions to estimate the size of the association.
Results:
Among all subgroups, consistently more parents with publicly insured children rated their insurance as adequate compared to those with private insurance. Parents of privately insured CSHCN with EBDPs rated their insurance as adequate at significantly lower rates than any other group of parents (55%)—including those with privately insured children without EBDPs (non-CSHCN= 67%; CSHCN=63%) and all other parents with publicly insured children (non-CSHCN= 87%; CSHCN=83%; CSHCN with EBDPs=84%).
Conclusion:
Future research should investigate if perceptions of insurance adequacy among families whose CSHCN has an EBDP aligns with reports of service access and unmet health care needs.
Keywords: Children with Special Health Care Needs; Children with Emotional, Behavioral, or Developmental Problems; Insurance Adequacy
Background
Cost barriers and problems with insurance coverage are the most commonly reported obstacles to accessing specialty health care and support services for children with special health care needs (CSHCN).1–3 While this is especially problematic for children who lack any or consistent health coverage,1 it can also affect children with inadequate insurance.4 Adequate insurance coverage—a key predictor for health care access and quality—is considered to be insurance that parents perceive to fully cover the services their child needs, that allows families to see providers they prefer, and that accrues out-of-pocket (OOP) costs for uncovered services or cost-sharing that parents feel are reasonable.5
Less adequate insurance is associated with reduced access to coordinated, comprehensive healthcare, easily accessible community-based health services, and lower levels of satisfaction with care for CSHCN.4,6 OOP costs for children’s health care—due to services that are not covered or come with higher levels of cost-sharing—can be significant. Nearly two-thirds of families report past-year OOP expenditures at or above $1000, and nearly one-third of parents reported that they felt these expenditures were unreasonable.7 Specifically, higher OOP costs for children’s health care—due to services that are not covered or come with higher levels of cost-sharing—are associated with higher rates of unmet health care needs or delayed access to health care.8 Unmet healthcare needs are, in turn, associated with increased family caregiving burdens and employment impacts.9,10
Among CSHCN, parents of children who have emotional, behavioral, or developmental problems (EBDPs) report need for specialized health care services and family support services at higher rates than parents of CSHCN without EBDPs.11–13 These families experience more significant impacts on child functioning and family work and finances, more difficulty accessing health care, and experience poorer quality in health services.9,10,14,15
Federal mandates for state Medicaid plans to provide coverage for Early and Periodic Screening, Diagnosis, and Treatment of Medicaid-covered children spurs state Medicaid programs to cover a broader spectrum of services than private insurance, with fewer out of pocket costs.16,17 Conversely, many commercial health plans offer more limited coverage for specialized health services and cover behavioral health services are lower rates than for medical services.18–20 For this reason, parents of CSHCN often report that private insurance is less adequate than public health coverage18,21 and parents of CSHCN with EBDPs may perceive private insurance benefits to be especially inadequate.
While several studies have sought to understand the adequacy of and OOP expenditures associated with public insurance compared to private insurance among both the general child population and CSHCN,5,6,18 perceptions of insurance adequacy and OOP expenses have not been examined specifically for CSHCN with EBDPs. This study’s objective is to assess differences in parent ratings of insurance adequacy for public versus private health coverage between non-CSHCN, CSHCN, and CSCHN with EBDPs. Findings may inform targeting and expansion of policy approaches that ensure that all children, including CSHCN with and without EBDPs, have adequate health coverage.
Methods
This study pooled publicly available data from the 2016 through 2019 National Survey of Children’s Health (NSCH), a population-based survey conducted by the US Census Bureau on behalf of the US Department of Health and Human Services, Health Resources and Services Administration, and Maternal and Child Health Bureau. It provides information on children’s health and mental health status, access to quality health care and community-supports, and the qualities of their social context. Households were randomly sampled, and data is weighted to enable generation of state and nationally representative estimates regarding the physical and emotional health of non-institutionalized children, ages 0 through 17 years old, living in the United States. Additional information about the NSCH methodology, sampling, and weighting procedures are detailed elsewhere.22 Due to the exclusive use of de-identified publicly available data, this study was exempt from human subjects review or approval.
Key Variables
Independent Variables.
The NSCH uses the Child with Special Health Care Needs screening tool, which is described in detail elsewhere,23 to identify CSHCN and assesses for the presence of an EBDP. A five-item screener assesses parent reported 1) need or use of prescription medication; 2) above-routine use of medical, mental health, or educational services compared to other children of the same age; 3) activity limitations in day-to-day life compared to similar age children; 4) need or use of specialized therapies; and 5) need or use of treatment or counseling for an emotional, behavioral, or developmental condition. Follow-up items are used to confirm that affirmative responses to each stem item are due to a physical, mental, behavioral, or other health condition that has or is expected to last at least 12 months. Non-CSHCN are those whose parents reported none of the five items in the last 12 months; CSHCN are those whose parents reported one or more of items 1 through 4; CSHCN with EBDPs are those whose parents reported their child had needed or used treatment or counseling for an emotional, behavioral, or developmental condition that had or is expected to last for at least 12 months (item 5) either alone or in conjunction with items 1 through 4.
Health insurance type is reported for children who were insured at the time of data collection. Public insurance includes “Medicaid, Medical Assistance, or any kind of government assistance plan for those with low incomes or a disability.” For the purposes of this analysis, children reported to have any public insurance—whether alone or in conjunction with private health coverage—are coded as having public insurance. Private insurance includes insurance provided through a current or former employer or union, insurance purchased directly from an insurance company, TRICARE or other military health care, or coverage through the Affordable Care Act or other private insurance. Children whose parents reported that they were only covered by private insurance were coded as having private coverage.
Dependent Variables.
The NSCH includes five items used to examine parents’ perceptions of the adequacy of their child’s health insurance: 1) How often Insurance Meets Physical Health Needs; 2) How often Insurance Meets Mental Health Needs; 3) How often Insurance Allows Provider of Choice, 4) Total Spent on Out-of-Pocket (OOP) Costs, which includes uncovered services, deductibles, and copayments; and 5) NSCH’s composite measure of Overall Insurance Adequacy.
For variables 1 through 3, the original four-level responses in the NSCH were recoded into a binary variable (1 = Always or Usually, 0 = Sometimes or Never). Because item 2 is not reported for children ages 0 to 2 years, these observations were assumed to not have mental health needs and that they were thus adequately covered. Original response options for Total Spent on OOP Costs variable were $0–249; $250 to 500; $501–999; $1000–5000; or more than $5000. From these, a binary variable was recreated (1 = over $1000, 0 = $1000 or under). A follow-up question assessed if out of pocket costs were perceived to be reasonable. It asked “how often are these costs reasonable?” and respondents chose from four response options: always, usually, sometimes or never. This follow up response was used in the composite measure of Overall Insurance Adequacy provided within the survey data and used as the final outcome variable in the study. Insurance was defined as adequate if parents reported all of the following: 1) the child currently had health insurance coverage, 2) for which the benefits usually or always met their child’s needs, and 3) which usually or always allowed the child to see needed providers, and 4) which incurred either no out-of-pocket expenses or out-of-pocket expenses were usually or always reasonable. Otherwise, health insurance was reported as inadequate.
Analysis
Our sample included children ages 0 to 17 years in the 2016 through 2019 NSCH datasets who had continuous insurance for the past 12 months (n=123,411). For all analyses, non-CSHCN were compared to CSHCN with no EBDPs and CSCHN with EBDPs. First, descriptive analysis was conducted to generate and compare weighted prevalence estimates for each subgroup (Table 1). Bivariate analysis compared insurance adequacy ratings for private and public insurance across each subgroup (Table 2), using chi-square tests to assess significance of difference across subgroups.
Table 1.
Sample Characteristics by Special Health Care Need Status and Type (weighted)
| Characteristics | Non-CSHCN | CSHCN with no EBDPs | CSHCN with EBDPs | |||||||
|---|---|---|---|---|---|---|---|---|---|---|
| (n=94,779) | (n=16,446) | (n=12,186) | ||||||||
| % | 95% CI | % | 95% CI | % | 95% CI | p | ||||
| Insurance Type | 0.00 | |||||||||
| Private Coverage Only | 64.5% | 63.7% | 65.3% | 59.0% | 57.1% | 60.8% | 43.4% | 41.5% | 45.4% | |
| Any Public Coverage | 35.5% | 34.7% | 36.3% | 41.0% | 39.2% | 42.9% | 56.6% | 54.6% | 58.5% | |
| Insurance Meets Mental Health Needs | 0.00 | |||||||||
| Sometimes or never | 3.4% | 3.1% | 3.7% | 5.5% | 4.8% | 6.3% | 18.2% | 16.7% | 19.7% | |
| Always or usually | 96.6% | 96.3% | 96.9% | 94.5% | 93.7% | 95.2% | 81.8% | 80.3% | 83.3% | |
| Insurance Meets Physical Health Needs | 0.00 | |||||||||
| Sometimes or never | 5.4% | 5.1% | 5.8% | 8.1% | 7.0% | 9.3% | 12.0% | 10.6% | 13.6% | |
| Always or usually | 94.6% | 94.2% | 94.9% | 91.9% | 90.7% | 93.0% | 88.0% | 86.4% | 89.4% | |
| Insurance Allows Provider of Choice | 0.00 | |||||||||
| Sometimes or never | 3.1% | 2.8% | 3.4% | 4.0% | 3.3% | 5.0% | 8.5% | 7.3% | 9.9% | |
| Always or usually | 96.9% | 96.6% | 97.2% | 96.0% | 95.0% | 96.8% | 91.5% | 90.1% | 92.7% | |
| Total Spent on Out-of-Pocket Costs | 0.00 | |||||||||
| More than $1000 per year | 12.0% | 11.6% | 12.4% | 20.7% | 19.5% | 21.9% | 23.8% | 22.2% | 25.5% | |
| Less than $1000 per year | 88.0% | 87.6% | 88.4% | 79.3% | 78.1% | 80.5% | 76.2% | 74.6% | 77.9% | |
| Insurance Overall Adequacy | 0.00 | |||||||||
| Not adequate | 24.5% | 23.9% | 25.1% | 30.2% | 28.6% | 31.8% | 35.5% | 33.6% | 37.5% | |
| Adequate | 75.5% | 74.9% | 76.1% | 69.9% | 68.2% | 71.5% | 64.5% | 62.5% | 66.4% | |
| Child Age | 0.00 | |||||||||
| 0–5 years | 36.0% | 35.3% | 36.8% | 21.7% | 20.2% | 23.2% | 13.1% | 11.7% | 14.6% | |
| 6–11 years | 32.8% | 32.1% | 33.5% | 35.6% | 33.9% | 37.3% | 40.3% | 38.3% | 42.3% | |
| 12–18 years | 31.2% | 30.5% | 31.9% | 42.7% | 41.0% | 44.5% | 46.6% | 44.6% | 48.6% | |
| Race/Ethnicity | 0.00 | |||||||||
| Hispanic | 24.8% | 24.0% | 25.6% | 20.5% | 18.7% | 22.5% | 21.0% | 18.9% | 23.2% | |
| White, non-Hispanic | 51.7% | 50.9% | 52.4% | 54.9% | 53.0% | 56.7% | 52.7% | 50.6% | 54.8% | |
| Black, non-Hispanic | 12.2% | 11.6% | 12.7% | 14.6% | 13.3% | 16.0% | 17.8% | 16.0% | 19.7% | |
| Other/Multiracial, Non-Hispanic | 11.4% | 11.0% | 11.8% | 10.0% | 9.0% | 11.1% | 8.5% | 7.7% | 9.5% | |
| Caregiver Education | 0.02 | |||||||||
| High School or less | 32.3% | 31.5% | 33.1% | 31.4% | 29.5% | 33.3% | 35.3% | 33.2% | 37.5% | |
| More than High School | 67.7% | 66.9% | 68.5% | 68.6% | 66.7% | 70.5% | 64.7% | 62.5% | 66.8% | |
| Family Structure | 0.00 | |||||||||
| Single Parent or Other Family Type | 22.7% | 22.0% | 23.3% | 29.0% | 27.3% | 30.8% | 38.7% | 36.7% | 40.7% | |
| Two Parents | 74.6% | 73.9% | 75.3% | 68.5% | 66.6% | 70.2% | 58.8% | 56.7% | 60.8% | |
| Missing | 2.7% | 2.4% | 3.0% | 2.5% | 1.8% | 3.6% | 2.5% | 1.7% | 3.7% | |
| Impairment in Daily Activities | 0.00 | |||||||||
| Do not have any conditions | 80.7% | 80.1% | 81.3% | 21.0% | 19.5% | 22.5% | 13.2% | 11.8% | 14.7% | |
| Daily activities never affected | 14.8% | 14.2% | 15.3% | 38.8% | 37.1% | 40.5% | 17.7% | 16.3% | 19.3% | |
| Activities moderately affected so | 4.3% | 4.0% | 4.6% | 33.4% | 31.7% | 35.1% | 43.0% | 41.0% | 45.1% | |
| Activities consistently affected, | 0.3% | 0.2% | 0.4% | 6.8% | 5.7% | 8.1% | 26.1% | 24.3% | 27.9% | |
| Poverty Level | 0.00 | |||||||||
| 0–99% FPL | 17.7% | 17.1% | 18.4% | 20.3% | 18.6% | 22.0% | 25.5% | 23.6% | 27.6% | |
| 100–199% FPL | 20.6% | 19.9% | 21.3% | 21.0% | 19.5% | 22.6% | 23.2% | 21.3% | 25.1% | |
| 200–399% FPL | 28.4% | 27.7% | 29.0% | 26.2% | 24.8% | 27.7% | 25.1% | 23.5% | 26.8% | |
| 400% FPL or greater | 33.3% | 32.7% | 34.0% | 32.5% | 31.0% | 34.1% | 26.2% | 24.7% | 27.7% | |
Data Source: National Survey of Children’s Health (NSCH), 2016–2019
Table 2.
Parent Reported Insurance Ratings by Special Health Care Need Status and Insurance Type (weighted)
| Children with no Special Health Care Needs | CSHCN with no EBDPs | CSHCN with EBDPs | ||||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Characteristics | Private Insurance Only | Any Public Insurance | Private Insurance Only | Any Public Insurance | Private Insurance Only | Any Public Insurance | ||||||||||||||||||
| (n=74,152) | (n=20,627) | (n=12,031) | (n=4,415) | (n=6,772) | (n=5,414) | |||||||||||||||||||
| % | 95% CI | % | 95% CI | p | % | 95% CI | % | 95% CI | p | % | 95% CI | % | 95% CI | p | ||||||||||
| Insurance Meets Mental Health Needs * | 0.00 | 0.36 | 0.00 | |||||||||||||||||||||
| Sometimes or never | 0.03 | 0.03 | 0.03 | 0.04 | 0.04 | 0.05 | 0.06 | 0.05 | 0.07 | 0.05 | 0.04 | 0.07 | 0.26 | 0.24 | 0.29 | 0.12 | 0.10 | 0.14 | ||||||
| Always or usually | 0.97 | 0.96 | 0.97 | 0.96 | 0.95 | 0.96 | 0.94 | 0.93 | 0.95 | 0.95 | 0.93 | 0.96 | 0.74 | 0.71 | 0.76 | 0.88 | 0.86 | 0.90 | ||||||
| Insurance Meets Physical Health Needs | 0.19 | 0.50 | 0.00 | |||||||||||||||||||||
| Sometimes or never | 0.06 | 0.05 | 0.06 | 0.05 | 0.04 | 0.06 | 0.08 | 0.07 | 0.10 | 0.08 | 0.06 | 0.10 | 0.16 | 0.14 | 0.19 | 0.09 | 0.07 | 0.11 | ||||||
| Always or usually | 0.94 | 0.94 | 0.95 | 0.95 | 0.94 | 0.96 | 0.92 | 0.90 | 0.93 | 0.92 | 0.90 | 0.94 | 0.84 | 0.81 | 0.86 | 0.91 | 0.89 | 0.93 | ||||||
| Insurance Allows Provider of Choice | 0.00 | 0.13 | 0.01 | |||||||||||||||||||||
| Sometimes or never | 0.03 | 0.03 | 0.03 | 0.04 | 0.03 | 0.04 | 0.04 | 0.03 | 0.04 | 0.05 | 0.03 | 0.07 | 0.10 | 0.08 | 0.13 | 0.07 | 0.06 | 0.09 | ||||||
| Always or usually | 0.97 | 0.97 | 0.97 | 0.96 | 0.96 | 0.97 | 0.97 | 0.96 | 0.97 | 0.95 | 0.93 | 0.97 | 0.90 | 0.87 | 0.92 | 0.93 | 0.91 | 0.94 | ||||||
| Total Spent on Out-of-Pocket Costs | 0.00 | 0.00 | 0.00 | |||||||||||||||||||||
| More than $1000 per year | 0.17 | 0.17 | 0.18 | 0.02 | 0.02 | 0.03 | 0.32 | 0.31 | 0.34 | 0.04 | 0.03 | 0.05 | 0.45 | 0.43 | 0.48 | 0.07 | 0.06 | 0.09 | ||||||
| Less than $1000 per year | 0.83 | 0.82 | 0.83 | 0.98 | 0.97 | 0.98 | 0.68 | 0.66 | 0.70 | 0.96 | 0.95 | 0.97 | 0.55 | 0.52 | 0.57 | 0.93 | 0.91 | 0.94 | ||||||
| Insurance Overall Adequacy | 0.00 | 0.00 | 0.00 | |||||||||||||||||||||
| Not adequate | 0.31 | 0.31 | 0.32 | 0.12 | 0.11 | 0.13 | 0.41 | 0.38 | 0.43 | 0.15 | 0.13 | 0.18 | 0.53 | 0.50 | 0.55 | 0.22 | 0.20 | 0.25 | ||||||
| Adequate | 0.69 | 0.68 | 0.69 | 0.88 | 0.87 | 0.89 | 0.60 | 0.57 | 0.62 | 0.85 | 0.82 | 0.87 | 0.47 | 0.45 | 0.50 | 0.78 | 0.75 | 0.80 | ||||||
Data Source: National Survey of Children’s Health (NSCH), 2016–2019;
Excludes Children under 3 years of age (n=9,973)
Fixed effects logistic regression models estimated the association between insurance type, CSCHN and EBDP status, the interaction of CSHCN and EBDP status and insurance type, and parent ratings of their child’s insurance adequacy (Appendix A). Models controlled for categorical measures of child’s age, race and ethnicity, family income, the child’s level of impairment, caregiver education level, and family structure. Less than 6% of the sample was missing data for the dependent variables and less than 2% of the sample was missing non-imputed data for covariates. Observations with missing data were excluded from multivariable analysis. With less than 10% of the data missing for any multivariable model, dropping observations with missingness does not compromise the national representativeness of the data or analytic results.24
Marginal effects were calculated for insurance type, CSHCN and EBDP status, and their interactions to estimate the size of the association and increase the ease of interpreting model results (Figure 1). Margins reflect predicted probabilities of insurance adequacy ratings for each subgroup represented by the interaction variables, controlling for all other covariates. Wald-tests estimate significance of differences in predicted probabilities between subgroups. All analysis used survey sampling weights to adjust for the complex survey design and was conducted in Stata 16 MP.
Figure 1. Adjusted Probability of Parent Report of Insurance Adequacy by Special Health Care Need Type and Insurance Type.
**Excludes Children under 3 years of age (n=9,973); *Difference in predicted probabilities between public and private insurance is significant at p<.001.
†Difference in predicted probabilities from non-CSHCN is significant at p<.05.
‡ Difference in predicted probabilities from CSHCN with no EBDPs is significant at p<.05
Results
Table 1 displays the socioeconomic, demographic, health, and health insurance characteristics of the sample, reported separately for children with no special health care needs, CSHCN with no EBDPs and for CSHCN who have EBDPs. Notable demographic and socioeconomic differences existed between CSHCN with EBDPs and non-CSHCN and other CSHCN. A larger proportion of CSHCN with EBDPs were teens or adolescents, lived in households with incomes below 100% of the FPL, and experienced moderate or significant impairment in daily activities. Additionally, fewer CSHCN with EBDPs lived in two parent households. Most children with no EBDPs were covered by only private insurance, while more than half of children with EBDPs were covered by some type of public health insurance (see Table 1).
Table 2 reports differences in prevalence estimates of parent insurance ratings of their public versus private insurance by child subgroup.
Non-CSHCN.
Similar proportions of parents of privately and publicly insured non-CSHCN children reported that their insurance met their child’s mental health needs, met their physical health needs, and allowed their child to see the provider of their choice. However, there were significant differences in private versus public insurance OOP costs and overall adequacy among non-CSHCN parents. Parents of privately insured non-CSHCN reported spending more than $1000 per year on OOP health care costs (0.17) and inadequate insurance overall (0.31) at higher rates than those of publicly insured non-CSHCN (0.02 and 0.12, respectively).
CSHCN without EBDPs.
There were no significant differences in parents’ ratings of insurance meeting their child’s mental health needs, physical health needs, or allowing for choice of providers between privately insured and publicly insured children. However, compared to publicly insured children, significantly more parents of privately insured children reported spending more than $1000 annually on OOP health care expenses (Private Only=0.32 vs. Any Public=0.04) and that their insurance was inadequate overall (Private Only=0.41 vs. Any Public=0.15).
CSHCN with EBDPs.
There were significant differences in parents’ insurance adequacy ratings for CSHCN with EBDPs across all items related to insurance type. Only 72% of parents of privately insured children reported that their insurance usually or always met their child’s mental health needs, compared to 87% of parents of publicly insured. Eighty-four percent (84%) of parents of privately insured children reported their insurance usually or always met all their child’s physical healthcare needs, compared to 91% of parents with public insurance. Further, 45% of families with privately insured children reported spending more than $1000 annually on OOP expenses compared with only 7% of parents of publicly insured children. Finally, the proportion of parents of privately insured children reporting adequate health insurance overall (0.47) was significantly less the proportion of parents of publicly insured children (0.78).
Figure 1 shows the predicted probability of parents’ insurance adequacy ratings for each subgroup of children by insurance type, adjusted for covariates. Differences between probabilities for each subgroup and for the privately versus publicly insured children are presented for each outcome. Results from the multivariable models and post estimation used to generate these estimates are provided in Appendix A and B.
Mental health needs.
Parents of privately insured CSHCN with EBDPs were less likely to rate their child’s insurance as meeting all their mental health needs (0.84) compared to parents of privately insured children with no EBDPs (non-CSHCN=0.95; CSHCN, no EBDPs=0.95). Among children with public health insurance, the difference is smaller, but still significant (non-CSHCN=0.94; CSHCN, no EBDPs=0.96; CSHCN with EBDPs=0.95). Differences between ratings for this measure from parents of children with public compared to private insurance were significant for all subgroups of children, but largest among those with EBDPs (non-CSHCN= −0.01; CSHCN, no EBDPs=0.01; CSHCN with EBDPs=0.10).
Physical health needs.
Parents of privately insured CSHCN with EBDPs were again less likely to rate their child’s insurance as usually or always meeting all their physical health needs (0.86), compared to all privately insured children with no EBDPs (non-CSHCN=0.93; CSHCN, no EBDPs=0.92). This difference is smaller and not statistically significant among children with any public health coverage (non-CSHCN=0.96; CSHCN, no EBDPs=0.95; CSHCN with EBDPs=0.94). Differences between ratings for this measure from parents of children with public compared to private insurance were again significant for all subgroups of children, but also largest among those with EBDPs (non-CSHCN=0.03; CSHCN, no EBDPs=0.03; CSHCN with EBDPs=0.08).
Provider choice.
Parents of privately insured CSHCN with EBDPs were less likely to rate their child’s insurance as usually allowing for their choice of providers (0.92), compared to privately insured children with no EBDPs (non-CSHCN=0.96; CSHCN, no EBDPs=0.97). This difference was smaller and not statistically significant among children with any public health coverage (non-CSHCN=0.97; CSHCN, no EBDPs=0.97; CSHCN with EBDPs=0.96). Differences between ratings for this measure from parents of children with public compared to private insurance were only significant for CSHCN with EBDPs (0.04).
Total OOP Costs.
Parent ratings of whether they spent less than $1000 on OOP costs in the last year varied significantly across subgroups of privately insured children. This difference is smaller, but statistically significant, among subgroups of publicly insured children (non-CSHCN=0.97; CSHCN, no EBDPs=0.96; CSHCN with EBDPs=0.94). Comparing children with public versus private insurance, differences between parent ratings for OOP costs were large and significant for all subgroups of children (non-CSHCN=0.13; CSHCN, no EBDPs=0.20; CSHCN with EBDPs=0.25), with private insurance consistently being rated with higher OOP costs.
Overall insurance adequacy.
The probability of parents rating their child’s insurance as adequate overall differed significantly across all subgroups of privately insured children, with parents of CSHCN with EBDPs having the lowest probability of a positive overall rating. Among parents of children with no EBDPs who have public insurance, the difference across subgroups was small and not statistically significant. The probability of parents of publicly insured CSHCN with EBDPs rating their child’s insurance as adequate was significantly lower than the other publicly insured child subgroups (0.84 versus non-CSHCN=0.87; CSHCN, no EBDPs=0.87). Differences between overall insurance adequacy ratings from parents of children with public compared to private insurance were large and significant for all subgroups of children, with the largest disparity existing for CSHCN with EBDPs (non-CSHCN=0.20; CSHCN, no EBDPs=0.24; CSHCN with EBDPs=0.28).
Discussion
This study demonstrates that parents’ perceptions of the adequacy of private versus public insurance varies by the types of health care needs experienced by a child. Among all subgroups, consistently more parents rated their child’s public insurance as adequate compared to those with private insurance. The proportion of parents of CSHCN, with and without EBDPs, rating their private insurance as adequate was significantly lower than parents of non-CSHCN. Moreover, significantly fewer parents of privately insured CSHCN with EBDPs perceive their child’s health coverage to be adequate for meeting their health care needs when compared to privately insured children without EBDPs (both non-CSHCN and CSHCN) as well as publicly insured children regardless of special health care need status (i.e., non-CSHCN, CSHCN with no EBDPs, and CSHCN with EBDPs). Essentially, parents of privately insured CSHCN with EBDPs are the most likely, of all families in this study, to consider their insurance to be inadequate. Finally, it is notable, too, that even among all publicly insured children, parents of those with EBDPs rated their child’s insurance as adequate at lower rates than another of parent groups.
Though this study provides nationally-representative estimates of parent perceptions of health insurance adequacy and is among the first to examine ratings by special health care need and insurance type, it is limited by the use of cross-sectional, parent-reported survey data, which may impact accuracy due to variation in recall abilities.25 The survey provides only a subjective assessment of insurance coverage sufficiency and the parents’ report of their child having a qualifying condition rather than through a diagnostic screening. Finally, causal relationships were not examined.
Research Implications
These limitations notwithstanding, these findings suggest that for CSHCN with EBDPs, commercial or private insurance is particularly inadequate, and that public health coverage is significantly more capable of meeting the complex health care needs of this population. This is consistent with existing evidence that CSHCN with EBDPs covered by public insurance have reduced odds of encountering cost barriers to care and having unmet mental health care or family support service needs compared to similar children with private insurance.12,26 However, while parent reports of insurance adequacy has been found to align well with health care access among the general child population,6 parent reports of insurance adequacy and cost burdens have been demonstrated to be misaligned with actual healthcare experiences among families of children with EBDPs.27 Future research should investigate if perceptions of insurance adequacy among families whose CSHCN has an EBDP aligns with reports of service access and unmet health care needs.
Further, when compared to other publicly insured children, those with EBDPs are least likely to report adequate insurance. This suggests that, though public insurance provides broader coverage than commercial or private insurance, public insurance still lacks needed coverage for EBDPs. Adequacy of public health coverage likely varies across states, as each state has autonomy to craft its own Medicaid plans within the guidelines of federal mandates. Further, variation exists across states in how coverage under the Children’s Health Insurance Program (CHIP) is structured.20 Additional research is needed understand what gaps continue to exist for publicly insured CSHCN with EBDPs, and how these gaps vary across state Medicaid and CHIP plans.
Policy Implications
When compared to both subgroups of children without EBDPs, higher proportions of CSHCN with EBDPs were teenagers, identified as Black, non-Hispanic, lived with a single parent or other family type, had moderate or consistent impairment in daily activities, lived below 100% of the FPL, and had a caregiver with a high school education or less. Because children with EBDPs are more likely to report inadequate insurance, children and families in these demographics are similarly affected—contributing to ongoing health disparities defined by sociodemographic characteristics.
Significant policy efforts have been made to expand commercial or private health coverage for services needed by those experiencing behavioral or developmental problems,28–30 but findings here suggest that commercial insurance coverage remains inadequate for many children who experience EBDPs. Attempts at state and federal parity mandates for behavioral health care have been limited by exemptions for certain types of insurers,30 and have been found to be mostly ineffective in increasing access to behavioral health services.31 The essential benefits mandate for health plans to cover “pediatric services” under the Affordable Care Act has led to extensive state-by-state variation in coverage for pediatric services, as states define “pediatric services” in broadly different ways.29 Further, many states explicitly exclude health services for CSHCN with EBDPs from coverage—most commonly for rehabilitative and therapeutic services.29
Commercial insurers’ refusal to provide coverage for treatments needed by this high need population contributes to growing Medicaid spending at the federal and state level.32 Under existing policies, many states acknowledge that specialized behavioral health care is mostly unobtainable for privately insured, higher income children because most publicly funded care is available only to those with Medicaid coverage or children in state custody.19 To addresses service gaps for this population, many states offer 1915(c) Home and Community-Based Services (HCBS) Medicaid waivers that extend Medicaid coverage for child or adult populations with complex health care needs, regardless of income levels or insurance status. These policies aim to divert children and adults with significant care needs from residential care settings by providing coverage for highly specialized services within the community that are tailored to the needs of a particular population. Many states offer such programs to children with autism or developmental disabilities, children with medical complexity or fragility or physical disabilities, and several states offer such programs for children with complex mental health needs.33 However, the number of children that can be served in these programs is limited by each state in an effort to constrain costs and waiting lists for participants can be very long.34
To increase the adequacy of insurance coverage for CSHCN with EBDPs, state HCBS Medicaid waivers must expand capacity and accessibility. This will require an investment in the tax pool for Medicaid services at both the federal and state level. Second, research suggests that mandates for commercial coverage of more treatments needed by children with complex EBDPs would result in reduced Medicaid costs.35 As such, private insurance companies must be mandated to increase coverage for emotional and behavioral health rehabilitative and family services. This will require government oversight and subsidization so that the additional coverage costs experienced by private insurers will not be passed onto the caregivers who carry that insurance.
While these policy changes would be expensive, public budgets currently incur negative costs of not supporting CSHCN with EBDPs and their families in the form of reduced child functioning, family employment opportunities, and financial burdens.10 Further, reduced expenditures through child welfare, juvenile justice, and special education systems—who often provide extensive services to these children and their families36—could help to offset additional state costs incurred through public insurance expansions and commercial insurance subsidies.19
Conclusion
Further research is needed to understand how state policy decisions around public and private health insurance impact the health and well-being of parents and families of CSHCN with EBDPs, and how families who lack adequate health insurance coverage cope when their needs are not met. Learning more about the social and financial costs of unmet health care needs—and the efficacy of policies and programs aimed at reducing these costs—will enable policy makers and state administrators to create and implement policies that increase well-being for families and CSHCN with EBDPs across the lifespan.
Supplementary Material
Funding:
Research in this publication was also supported in part by the National Institute of Mental Health of the National Institutes of Health under Award Number 1K01MH129991. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
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