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Maryland’s Children with Special Health Care Needs (CSHCN): Priority Issues and Data

Maryland’s Children with Special Health Care Needs (CSHCN): Priority Issues and Data. Meredith Pyle - Office for Genetics and Children with Special Health Care Needs (OGCSHCN); Ally Burleson-Gibson – OGCSHCN; and Josie Thomas , The Parents’ Place of Maryland (PPMD). Who are CSHCN?.

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Maryland’s Children with Special Health Care Needs (CSHCN): Priority Issues and Data

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  1. Maryland’s Children with Special Health Care Needs (CSHCN): Priority Issues and Data Meredith Pyle - Office for Genetics and Children with Special Health Care Needs (OGCSHCN); Ally Burleson-Gibson – OGCSHCN; and Josie Thomas, The Parents’ Place of Maryland (PPMD)

  2. Who are CSHCN? Children/Youth with special health care needs (CSHCN/YSHCN): CSHCN are those children who have or who are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.

  3. Overview of Maryland’s CSHCN population

  4. 15.5% corresponds to ~244,000 children with SHCN in 2010.

  5. CSHCN Prevalence – Types of Special Needs • 22% reported to have depression, anxiety, eating disorder, or other emotional problem • 31.8%: ADHD • 10.3%: mental retardation or DD • 6.6%: Autism Spectrum Disorder From 2005-06 NS-CSHCN

  6. Majority are White Non-Hispanic Almost a third are African American Non-Hispanic Over 5% are Hispanic Demographic Characteristics From 2005-06 NS-CSHCN

  7. Demographic Characteristics • Majority fall between the ages of 8-11 years of age • Over half were under age 12 in 2006 From 2005-06 NS-CSHCN

  8. Socioeconomic Characteristics • Majority lived in wealthier households; almost 30% were between 0-199% FPL • This has almost certainly changed as a result of the recession From 2005-06 NS-CSHCN

  9. Top Ten Priorities (from Stakeholder Survey) for CYSHCN • Adequate health insurance and health care financing • Access to specialty care • Medical Home for every child (primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective) • Families receive needed services • Mental health screening, treatment, and services • Access to primary care • Early intervention services • Access to oral health care • Organized, community-based system of care for CYSHCN that is easy to use (i.e. being able to find services) • Developmental screening

  10. Core Outcomes for CSHCN • Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive; • Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home; • Families of CSHCN have adequate private and/or public insurance to pay for the services they need; • Children are screened early and continuously for special health care needs; • Community-based services for children and youth with special health care needs are organized so families can use them easily; • Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

  11. All the identified priorities fit into the Core Outcomes: • Adequate Insurance and Financing • Medical Home -Access to primary care; access to specialty care; access to oral health care ; Mental health • Community Based Systems that are Easy to Use -Families receive needed services; Early Intervention • Screening (Developmental)

  12. Adequate Insurance and Financing From 2005-06 NS-CSHCN • Most CSHCN in Maryland have some type of health insurance • A significant portion of the uninsured children in Maryland lack coverage due to their citizenship status • Underinsurance is a serious problem: • -Restrictions on the amount or scope of health benefits create unmet needs for about 30% of CSHCN

  13. Adequate Insurance and Financing According to preliminary data analysis from the 2009-10 Maryland Parent Survey: • 7.4% of CSHCN were without insurance sometime in the past year • 49% of currently insured CSHCN have inadequate insurance • 40% of families of CSHCN pay $1000 or more in out-of-pocket medical expenses per year for the child

  14. Medical Home • Disparities exist among age groups, insurance issues, and among CSHCN with E/B/D issues • CSHCN below 200% FPL, who are Afr. American or Hispanic are also less likely to have MH. From 2005-06 NS-CSHCN

  15. Access to Primary Care From 2005-06 NS-CSHCN Some pediatric providers do not accept Medicaid or limit the number of patients with Medicaid due to lower reimbursement rates (Focus groups on medical home conducted by the Maryland chapter of the American Academy of Pediatrics, 2005).

  16. Access to Specialty Care • Among CSHCN who needed a referral, those with public insurance only or with one or more E/B/D issues were more likely to have problems getting it. From 2005-06 NS-CSHCN

  17. Access to Oral Health Care From 2005-06 NS-CSHCN From 2007 NSCH

  18. Mental Health Treatment and Services From 2005-06 NS-CSHCN From 2007 NSCH Mental Health Screening: Data? Possible sources may include Mental Health Admin, EPSDT (for Medicaid Population), and MSDE

  19. Community-Based Systems that are Easy to Use • 1 in 10 Maryland families report difficulty using needed services • Hispanic families, those with CSHCN with functional limitations or with one or more E/B/D are more likely to have problems using needed services From 2005-06 NS-CSHCN

  20. Families Receive Needed Services From 2005-06 NS-CSHCN From 2007 NSCH

  21. Families Receive Needed Services According to preliminary data analysis from the 2009-10 Maryland Parent Survey: • 35% of CSHCN have conditions that have caused family members to cut back or stop working

  22. Early Intervention From MSDE Early Intervention Indicators (2007)

  23. Early Intervention According to preliminary data analysis from the 2009-10 Maryland Parent Survey: • 63.9 % of CSHCN have an IFSP or IEP • 56.1% of parents are satisfied with the services they receive from IFSP or IEP

  24. Developmental Screening From 2005-06 NS-CSHCN

  25. CSHCN Priority Health Needs for Ranking • Medical Home • Community-based, easy to use system of care • Health care insurance and financing • Access to primary care • Access to specialty care • Mental health care • Access to oral health • Early Intervention services • Families receive needed services • Developmental screening

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