Quality of Primary Care for Children With Disabilities Enrolled in Medicaid

Published:March 09, 2017DOI:



      The quality of primary care delivered to Medicaid-insured children with disabilities (CWD) is unknown. We used the newly validated CWD algorithm (CWDA) to examine CWD prevalence among Medicaid enrollees 1 to 18 years old, primary care quality for CWD, and differences in primary care quality for CWD and non-CWD.


      Cross-sectional study using 2008 Medicaid Analytic eXtract claims data from 9 states, including children with at least 11 months of enrollment (N = 2,671,922 enrollees). We utilized CWDA to identify CWD and applied 12 validated or endorsed pediatric quality measures to assess preventive/screening, acute, and chronic disease care quality. We compared quality for CWD and non-CWD unmatched and matched on age, sex, and number of nondisabling chronic conditions and outpatient encounters.


      CWDA identified 5.3% (n = 141,384) of our study population as CWD. Care quality levels for CWD were below 50% on 8 of 12 quality measures (eg, adolescent well visits [44.9%], alcohol/drug treatment engagement [24.9%]). CWD care quality was significantly better than the general population of non-CWD by +0.9% to +15.6% on 9 measures, but significantly worse for 2 measures, chlamydia screening (−3.4%) and no emergency department visits for asthma (−5.0%; all P < .01 to .001). Differences in care quality between CWD and non-CWD were generally smaller or changed direction when CWD were compared to a general population or matched group of non-CWD.


      One in 20 Medicaid-insured children is CWD, and the quality of primary care delivered to CWD is suboptimal. Areas needing improvement include preventive/screening, acute care, and chronic disease management.


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        • World Health Organization
        International Classification of Functioning, Disability, and Health: ICF.
        World Health Organization, Geneva2001
      1. United Nations. Convention on the Rights of Persons With Disabilities and Optional Protocol. 2006 (Available at:) (Accessed September 22, 2015)
        • US Census Bureau
        Disability Characteristics. 2013 American Community Survey 1-Year Estimates.
        2013 (Available at:)
        • Houtrow A.J.
        • Larson K.
        • Olson L.M.
        • et al.
        Changing trends of childhood disability, 2001–2011.
        Pediatrics. 2014; 134: 530-538
        • Halfon N.
        • Houtrow A.
        • Larson K.
        • et al.
        The changing landscape of disability in childhood.
        Future Child. 2012; 22: 13-42
        • Kuhlthau K.
        • Perrin J.M.
        • Ettner S.L.
        • et al.
        High-expenditure children with Supplemental Security Income.
        Pediatrics. 1998; 102: 610-615
        • Newacheck P.W.
        • Inkelas M.
        • Kim S.E.
        Health services use and health care expenditures for children with disabilities.
        Pediatrics. 2004; 114: 79-85
        • American Academy of Pediatrics Committee on Practice and Ambulatory Medicine; Bright Futures Periodicity Schedule Workgroup
        2016 recommendations for preventive pediatric health care.
        Pediatrics. 2016; 137: 1-3
        • Canfield R.L.
        • Henderson C.R.
        • Cory-Slechta D.A.
        • et al.
        Intellectual impairment in children with blood lead concentrations below 10 microg per deciliter.
        N Engl J Med. 2003; 348: 1517-1526
        • Megargel E.
        • Broder-Fingert S.
        Autism and hospitals: a difficult match.
        Acad Pediatr. 2012; 12: 469-470
        • Boss E.F.
        • Niparko J.K.
        • Gaskin D.J.
        • et al.
        Socioeconomic disparities for hearing-impaired children in the United States.
        Laryngoscope. 2011; 121: 860-866
        • Chien A.T.
        • Song Z.
        • Chernew M.E.
        • et al.
        Two-year impact of the alternative quality contract on pediatric health care quality and spending.
        Pediatrics. 2014; 133: 96-104
        • Mangione-Smith R.
        • DeCristofaro A.H.
        • Setodji C.M.
        • et al.
        The quality of ambulatory care delivered to children in the United States.
        N Engl J Med. 2007; 357: 1515-1523
        • Iezzoni L.I.
        • McCarthy E.P.
        • Davis R.B.
        • et al.
        Mobility impairments and use of screening and preventive services.
        Am J Public Health. 2000; 90: 955-961
        • Chan L.
        • Doctor J.N.
        • MacLehose R.F.
        • et al.
        Do Medicare patients with disabilities receive preventive services? A population-based study.
        Arch Phys Med Rehabil. 1999; 80: 642-646
        • Murphy N.A.
        • Elias E.R.
        Sexuality of children and adolescents with developmental disabilities.
        Pediatrics. 2006; 118: 398-403
        • Raddish M.
        The immunization status of children with spina bifida.
        Arch Pediatr Adolesc Med. 1993; 147: 849-853
        • Kuhlthau K.
        • Walker D.K.
        • Perrin J.M.
        • et al.
        Assessing managed care for children with chronic conditions.
        Health Aff (Millwood). 1998; 17: 42-52
        • Palfrey J.S.
        • Levy J.C.
        • Gilbert K.L.
        Use of primary care facilities by patients attending specialty clinics.
        Pediatrics. 1980; 65: 567-572
        • Perrin J.M.
        • Kuhlthau K.
        • McLaughlin T.J.
        • et al.
        Changing patterns of conditions among children receiving Supplemental Security Income disability benefits.
        Arch Pediatr Adolesc Med. 1999; 153: 80-84
        • Chien A.T.
        • Li Z.
        • Rosenthal M.B.
        Improving timely childhood immunizations through pay for performance in Medicaid-managed care.
        Health Serv Res. 2010; 45: 1934-1947
        • Chien A.T.
        • Kuhlthau K.A.
        • Toomey S.L.
        • et al.
        Development of the children with disabilities algorithm.
        Pediatrics. 2015; 136: e871-e878
        • Mangione-Smith R.
        • Schiff J.
        • Dougherty D.
        Identifying children's health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process.
        Acad Pediatr. 2011; 11: S11-S21
        • Chien A.
        • Colman M.
        • Ross L.
        Qualitative insights into how pediatric pay-for-performance programs are being designed.
        Acad Pediatr. 2009; 9: 185-191
        • Chien A.T.
        • Conti R.M.
        • Pollack H.A.
        A pediatric-focused review of the performance incentive literature.
        Curr Opin Pediatr. 2007; 19: 719-725
        • US Department of Health and Human Services; Health Resources and Services Administration; Maternal and Child Health Bureau
        Health Care Financing for CSHCN.
        2012 (Available at:) (Accessed September 10, 2014)
      2. National Center for Children in Poverty. Low-Income Children in the United States: National and State Trend Data, 1998–2008. New York, NY, 2009. Available at: Accessed June 3, 2014.

        • US Department of Health and Human Services; Health Resources and Services Administration
        The National Survey of Children With Special Health Care Needs Chartbook, 2005–2006.
        US Department of Health and Human Services, Rockville, Md2008
      3. Dodd A, Nysenbaum J, Zlatinov A. Medicaid Policy Brief: Assessing the Usability of the MAX 2007 Inpatient and Prescription Encounter Data for Enrollees in Comprehensive Managed Care. Available at: Accessed September 22, 2015.

      4. Byrd V, Dodd A, Malsberger R, et al. Medicaid Policy Brief: Assessing the Usability of Max 2008 Encounter Data for Enrollees in Comprehensive Managed Care. Available at: Accessed September 22, 2015.

        • Healthcare Cost and Utilization Project
        HCUP Chronic Condition Indicator.
        2014 (Available at:)
      5. National Committee for Quality Assurance. HEDIS 2013. Volume 2: Technical Specifications. Available at:

        • Center for Medicare and Medicaid Services
        CHIPRA Initial Core Set of Children's Health Care Quality Measures.
        2016 (Available at:) (Accessed April 14, 2016)
        • Institute of Medicine
        Child and Adolescent Health and Health Care Quality: Measuring What Matters.
        National Academies Press, Washington, DC2011
        • Liptak G.S.
        • Orlando M.
        • Yingling J.T.
        • et al.
        Satisfaction with primary health care received by families of children with developmental disabilities.
        J Pediatr Health Care. 2006; 20: 245-252
        • Toomey S.L.
        • Chien A.T.
        • Elliott M.N.
        • et al.
        Disparities in unmet need for care coordination: the National Survey of Children's Health.
        Pediatrics. 2013; 131: 217-224
        • Crandall W.
        • Kappelman M.D.
        • Colletti R.B.
        • et al.
        ImproveCareNow: the development of a pediatric inflammatory bowel disease improvement network.
        Inflamm Bowel Dis. 2011; 17: 450-457