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. In MarylandNationwide Prevalence (%) of CSHCN according to 2005-06 NS-CSHCN15.513.9 Prevalence (%) of CSHCN according to 2007 NSCH20.119.2 % of all households with children that report having at least one CSHCN 23.5%21.8%

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

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

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

9. Top Ten Priorities (from Stakeholder Survey) for CYSHCN 1. Adequate health insurance and health care financing 2. Access to specialty care 3. Medical Home for every child (primary care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective) 4. Families receive needed services 5. Mental health screening, treatment, and services 6. Access to primary care 7. Early intervention services 8. Access to oral health care 9. Organized, community-based system of care for CYSHCN that is easy to use (i.e. being able to find services) 10. 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 State vs. NationIn Maryland by Household Income (%FPL) Adequacy of InsuranceMarylandNationwide0-99100-199200-399400 or greater % of families who have adequate private and/or public insurance to pay for the services they need65.56252.561.665.771.1 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

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. % CSHCN successfully achieving medical home in Maryland (Nationwide) Overall45.6 (47.1) Subgroups Age Group 0-5 years of age54.6 6-11 years of age47.1 12-17 years of age40 Consistency of Insurance Coverage Insured for the entire year46.2 One or more periods of being uninsured in a year34.2 Type of Insurance With private insurance only50.4 With public insurance only37.1 Emotional/Behavioral/ Developmental Issues No emotional, behavioral, or developmental issues53.3 One or more emotional, behavioral, and developmental issues28.7 From 2005-06 NS-CSHCN

15. Access to Primary Care MarylandNationwide % of CSHCN without any personal doctor or nurse 4.26.5 % CSHCN without a usual source of care when sick or who rely on the ER 5.55.7 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). From 2005-06 NS-CSHCN

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. % CSHCN needing a referral for specialist care or services and had problems getting it in Maryland (Nationwide) Overall20.9 (21.1) Subgroups Type of Insurance With private insurance only18.6 With public insurance only27.6 Emotional/Behavioral/Developme ntal Issues No emotional, behavioral, or developmental issues17.6 One or more emotional, behavioral, or developmental issues27.8 From 2005-06 NS-CSHCN

17. Access to Oral Health Care MarylandNationwide % of CSHCN with unmet needs for preventative dental care (of those needing it)6.57 % of CSHCN with unmet needs for other dental care (of those needing it)13.99.6 OverallCSHCNnon-CSHCN % Children in Maryland age 1-17 whose teeth are in excellent or very good condition77.171.678.5 From 2007 NSCH From 2005-06 NS-CSHCN

18. Mental Health Treatment and Services MarylandNationwide % CSHCN who needed and had unmet needs for mental health care and counseling13.614.6 OverallCSHCNnon-CSHCN % Children in Maryland age 2-17 who needed and received treatment from a mental health professional59.458.770.2 From 2007 NSCH From 2005-06 NS-CSHCN 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 % CSHCN whose services are organized in ways that families can use them easily in Maryland (Nationwide) Overall89.3 (89.1) Subgroups Race/Ethnicity Hispanic75.8 White, non-Hispanic88.4 Black, non-Hispanic94.6 Multi-racial, non-Hispanic84.8 Other, non-Hispanic86 Specific Types of Health Need Functional Limitations74.2 Managed by Rx Meds98 Above routine need/use of services82.3 Rx meds AND service use89 Emotional/Behavioral/Develo pmental Issues One or more emotional, behavioral, or developmental issues80.9 No emotional, behavioral, or developmental issues93.2 From 2005-06 NS-CSHCN

20. Families Receive Needed Services MarylandNationwide % CSHCN needing one or more services with unmet needs for 1 or more specific family support services22.927.9 % CSHCN needing family respite care with unmet needs for respite care or more services with unmet needs for 1 or more specific family support services47.548.1 % CSHCN whose conditions cause financial problems for the family17.518.1 % CSHCN whose families spend 11 or more hours per week providing or coordinating child's health care8.19.7 %CSHCN whose conditions cause family members to cut back or stop working25.823.8 From 2005-06 NS-CSHCN OverallCSHCNnon-CSHCN % Maryland children currently living with their mother whose mother's general health and mental/emotional health are both excellent or very good63.254.565.5 % Maryland children currently living with their father whose father's general health and mental/emotional health are both excellent or very good66.854.669.4 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 Maryland Early Intervention Indicators, 2007-20082007-2008 % of infants and toddlers with IFSPs who receive the early intervention services on their IFSPs in a timely manner95.8 % of infants and toddlers with IFSPs who primarily receive early intervention services in the home or programs for typically developing children91.2 % of families participating in Part C who report that early intervention services have helped the family78% % 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 timeline94.8 % 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 3rd birthday99.1 Total # of children receiving early intervention services annually13,346 Total # of children referred to local Infants and Toddlers programs annually11,578 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