Marylands Children with Special Health Care Needs CSHCN

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? 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.

Overview of Maryland’s CSHCN population

15. 5% corresponds to ~244, 000 children with SHCN in 2010. In Maryland Nationwide Prevalence (%) of CSHCN according to 2005 -06 NS-CSHCN 15. 5 13. 9 Prevalence (%) of CSHCN according to 2007 NSCH 20. 1 19. 2 % of all households with children that report having at least one CSHCN 23. 5% 21. 8%

CSHCN Prevalence – Types of Special Needs q q 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

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

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

Socioeconomic Characteristics • Majority lived in wealthier households; almost 30% were between 0199% FPL • This has almost certainly changed as a result of the recession From 2005 -06 NS-CSHCN

Top Ten Priorities (from Stakeholder Survey) for CYSHCN 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 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

Core Outcomes for CSHCN n n n 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.

All the identified priorities fit into the Core Outcomes: n n 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)

Adequate Insurance and Financing State vs. Nation Adequacy of Insurance % of families who have adequate private and/or public insurance to pay for the services they need In Maryland by Household Income (%FPL) Maryland Nationwide 0 -99 100 -199 200 -399 400 or greater 65. 5 62 52. 5 61. 6 65. 7 71. 1 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

Adequate Insurance and Financing According to preliminary data analysis from the 2009 -10 Maryland Parent Survey: n 7. 4% of CSHCN were without insurance sometime in the past year n 49% of currently insured CSHCN have inadequate insurance n 40% of families of CSHCN pay $1000 or more in out-of-pocket medical expenses per year for the child

Medical Home % CSHCN successfully achieving medical home in Maryland (Nationwide) Overall 45. 6 (47. 1) Subgroups n n 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. Age Group 0 -5 years of age 54. 6 6 -11 years of age 47. 1 12 -17 years of age 40 Consistency of Insurance Coverage Insured for the entire year 46. 2 One or more periods of being uninsured in a year 34. 2 Type of Insurance With private insurance only 50. 4 With public insurance only 37. 1 Emotional/Behavioral/ Developmental Issues No emotional, behavioral, or developmental issues 53. 3 One or more emotional, behavioral, and developmental issues 28. 7 From 2005 -06 NS-CSHCN

Access to Primary Care Maryland Nationwide % of CSHCN without any personal doctor or nurse 4. 2 6. 5 % CSHCN without a usual source of care when sick or who rely on the ER 5. 5 5. 7 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).

Access to Specialty Care % CSHCN needing a referral for specialist care or services and had problems getting it in Maryland (Nationwide) Overall 20. 9 (21. 1) Subgroups Type of Insurance With private insurance only 18. 6 With public insurance only 27. 6 Emotional/Behavioral/Developme ntal Issues No emotional, behavioral, or developmental issues 17. 6 One or more emotional, behavioral, or developmental issues 27. 8 From 2005 -06 NS-CSHCN 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. n

Access to Oral Health Care % of CSHCN with unmet needs for preventative dental care (of those needing it) % of CSHCN with unmet needs for other dental care (of those needing it) Marylan d Nation wi de 6. 5 7 13. 9 9. 6 Overall % Children in Maryland age 1 -17 whose teeth are in excellent or very CSHCN From 2005 -06 NS-CSHCN non. CSH CN From 2007 NSCH

Mental Health Treatment and Services Maryland % CSHCN who needed and had unmet needs for mental health care and counseling 13. 6 Nationwide 14. 6 From 2005 -06 NS-CSHCN Overall % Children in Maryland age 2 -17 who needed and received treatment from a mental health professional 59. 4 CSHCN non-CSHCN 58. 7 70. 2 From 2007 NSCH Mental Health Screening: Data? Possible sources may include Mental Health Admin, EPSDT (for Medicaid Population), and MSDE

Community-Based Systems that are Easy to Use % CSHCN whose services are organized in ways that families can use them easily in Maryland (Nationwide) n n 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 Overall 89. 3 (89. 1) Subgroups Race/Ethnicity Hispanic 75. 8 White, non-Hispanic 88. 4 Black, non-Hispanic 94. 6 Multi-racial, non-Hispanic 84. 8 Other, non-Hispanic 86 Specific Types of Health Need Functional Limitations 74. 2 Managed by Rx Meds 98 Above routine need/use of services 82. 3 Rx meds AND service use 89 Emotional/Behavioral/Develo pmental Issues One or more emotional, behavioral, or developmental issues 80. 9 No emotional, behavioral, or developmental issues 93. 2

Families Receive Needed Services Maryland Nationwide % CSHCN needing one or more services with unmet needs for 1 or more specific family support services 22. 9 27. 9 % CSHCN needing family respite care with unmet needs for respite care or more services with unmet needs for 1 or more specific family support services 47. 5 48. 1 % CSHCN whose conditions cause financial problems for the family 17. 5 18. 1 % CSHCN whose families spend 11 or more hours per week providing or coordinating child's health care 8. 1 9. 7 %CSHCN whose conditions cause family members to cut back or stop working 25. 8 23. 8 From 2005 -06 NS-CSHCN Overall CSHCN non-CSHCN % Maryland children currently living with their mother whose mother's general health and mental/emotional health are both excellent or very good 63. 2 54. 5 65. 5 % Maryland children currently living with their father whose father's general health and mental/emotional health are both excellent or very good 66. 8 54. 6 69. 4 From 2007 NSCH

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

Early Intervention From MSDE Early Intervention Indicators (2007) Total # of children receiving early intervention services annually 13, 346 Total # of children referred to local Infants and Toddlers programs annually 11, 578 Maryland Early Intervention Indicators, 2007 -2008 % of infants and toddlers with IFSPs who receive the early intervention services on their IFSPs in a timely manner 95. 8 % of infants and toddlers with IFSPs who primarily receive early intervention services in the home or programs for typically developing children 91. 2 % of families participating in Part C who report that early intervention services have helped the family 78% % of eligible infants and toddlers with IFSPs for whom an evaluation and assessment and an initial IFSP meeting were conducted within Part C's 45 -day timeline 94. 8 % of all children exiting Part C who received timely transition planning to support the child's transition to preschool and other appropriate community services by their 3 rd birthday 99. 1

Early Intervention According to preliminary data analysis from the 2009 -10 Maryland Parent Survey: n 63. 9 % of CSHCN have an IFSP or IEP n 56. 1% of parents are satisfied with the services they receive from IFSP or IEP

Developmental Screening From 2005 -06 NS-CSHCN

CSHCN Priority Health Needs for Ranking n n n n n 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