Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014-2018.

OBJECTIVE: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance. METHODS: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444). It then applies the previously validated Children with Disabilities Algorithm (CWDA) and its companion, the Diagnosis-to-Impairment-Type Algorithm (DITA), to compare state-level prevalence rates by insurance source for disability overall and for each of five impairment types singly and in combination. RESULTS: Disability prevalence was greater among the Medicaid-insured AYA-WD by +7.6% points (pp)-Medicaid: 11.9% (47,654/333,931), commercial: 4.3% (16,907/392,444). Most AYA-WD had a single impairment, but the prevalence of AYA-WD with two or more impairments was greater among the Medicaid-insured than the commercially insured (+9.9 pp; Medicaid: 33.5% [15,963/47,654], commercial: 23.7% [3992/16, 907]), as was the prevalence of impairment types that were physical (+6.7 pp; Medicaid: 54.7% [26,054/47,654], commercial: 48.0% [8121/16,907]); developmental (+4.1 pp; Medicaid: 35.4% [16,874/47,654], commercial: 31.3% [5290/16,907]); psychiatric (+6.7 pp; Medicaid 21.3% [10,175/47,654], commercial: 14.6% [2470/16,907]), and intellectual (+9.3 pp; Medicaid: 26.2% [12,501/47,654], commercial: 16.9% [2858/16,907]). CONCLUSIONS: CWDA and DITA can be used to understand the rates at which impairment types and combinations occur in a population with childhood-onset disabilities.

Development of the Children With Disabilities Algorithm.

BACKGROUND: A major impediment to understanding quality of care for children with disabilities (CWD) is the lack of a method for identifying this group in claims databases. We developed the CWD algorithm (CWDA), which uses International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes to identify CWD. METHODS: We conducted a cross-sectional study that (1) ensured each of the 14,567 codes within the 2012 ICD-9-CM codebook was independently classified by 3 to 9 pediatricians based on the code's likelihood of indicating CWD and (2) triangulated the resulting CWDA against parent and physician assessment of children's disability status by using survey and chart abstraction, respectively. Eight fellowship-trained general pediatricians and 42 subspecialists from across the United States participated in the code classification. Parents of 128 children from a large, free-standing children's hospital participated in the parent survey; charts of 336 children from the same hospital were included in the abstraction study. RESULTS: CWDA contains 669 ICD-9-CM codes classified as having a ≥75% likelihood of indicating CWD. Examples include 318.2 Profound intellectual disabilities and 780.72 Functional quadriplegia. CWDA sensitivity was 0.75 (95% confidence interval 0.63-0.84) compared with parent report and 0.98 (0.95-0.99) compared with physician assessment; its specificity was 0.86 (0.72-0.95) and 0.50 (0.41-0.59), respectively. CONCLUSIONS: ICD-9-CM codes can be classified by their likelihood of indicating CWD. CWDA triangulates well with parent report and physician assessment of child disability status. CWDA is a new tool that can be used to assess care quality for CWD.

The medical home: relationships with family functioning for children with and without special health care needs.

OBJECTIVE: In this study we tested the association of the medical home with family functioning for children without and with special health care needs (CSHCN). METHODS: We used data from the 2007 National Survey of Children's Health to run multivariate logistic regressions to test the association between having a medical home and family functioning (difficulty with parental coping, parental aggravation, childcare/work issues, and missed school days). We further assessed interactions of CSHCN status with having a medical home. RESULTS: In adjusted analysis, parents of children with a medical home were less likely to report difficulty with parental coping (odds ratio [OR] 0.26 [0.19-0.36]), parental aggravation (OR 0.54 [0.45-0.65]), childcare/work issues (OR 0.72 [0.61-0.84]), and missed school days (OR 0.87[0.78-0.97]) for their children than those without a medical home. Using interaction terms, we found that for most outcomes, the medical home had a greater association for CSHCN compared with healthy peers, with odds ratios ranging 0.40 (CI 0.22-0.56) for parental aggravation to 0.67 (CI0.52-0.86) for missed school days. CONCLUSIONS: We show that the medical home is associated with better family functioning. All children may benefit from receiving care in a medical home, but CSHCN, who have greater needs, may particularly benefit from this enhanced model of care.

The future of health insurance for children with special health care needs.

CONTEXT: Because of their elevated need for services, health insurance is particularly important for children with special health care needs. In this article we assess how well the current system is meeting the insurance needs of children with special health care needs and how emerging trends in health insurance may affect their well-being. METHODS: We begin with a review of the evidence on the impact of health insurance on the health care experiences of children with special health care needs based on the peer-reviewed literature. We then assess how well the current system meets the needs of these children by using data from 2 editions of the National Survey of Children With Special Health Care Needs. Finally, we present an analysis of recent developments and emerging trends in the health insurance marketplace that may affect this population. RESULTS: Although a high proportion of children with special health care needs have insurance at any point in time, nearly 40% are either uninsured at least part of the year or have coverage that is inadequate. Recent expansions in public coverage, although offset in part by a contraction in employer-based coverage, have led to modest but significant reductions in the number of uninsured children with special health care needs. Emerging insurance products, including consumer-directed health plans, may expose children with special health care needs and their families to greater financial risks. CONCLUSIONS: Health insurance coverage has the potential to secure access to needed care and improve the quality of life for these children while protecting their families from financially burdensome health care expenses. Continued vigilance and advocacy for children and youth with special health care needs are needed to ensure that these children have access to adequate coverage and that they fare well under health care reform.