Access to Care for Children and Youth with Special Health Care Needs: A National Perspective May 25, 2016 Debra Waldron, MD, MPH Director, Division of Services for Children with Special Health Needs Maternal and Child Health Bureau (MCHB) Health Resources and Services Administration (HRSA)

Background 2

MCHB: your federal partners in improving Maternal and Child Health US Department of Health and Human Services Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB) Division of Services for Children with Special Health Needs (DSCSHN) Integrated Services Branch

Who are Children and Youth with Special Health Care Needs (CYSHCN)? “...those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (McPherson et al., 1998.) Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Percent and Number of Children with Special Health Care Needs in the US and Kentucky Non- CSHCN CSHCN National % Pop. Est. 63,134,95911,203,616 Kentucky % Pop. Est. 818,057197,916

Children and Youth with Special Health Care Needs* (CYSHCN) ~14.6 million children 0–17 years in the United States (19.8%) have special health care needs. Prevalence of CYSHCN ranges from 14.4% to 26.4% across the 50 states and the District of Columbia. About 65% of CYSHCN experience more complex service needs that go beyond a primary need for prescription medications to manage their health condition. 5 *2011/2012 National Survey of Children’s Health

MCH 3.0 Transformation of the Title V Block Grant to states Goals: Reduce state burden Maintain flexibility for states Improve accountability

New MCH 3.0 National Performance Measures (NPMs) 1) Percent of women with a past year preventive medical visit 2) Percent of cesarean deliveries among low-risk first births 3) Percent of very low birth weight (VLBW) infants born in a hospital with a Level III? Neonatal Intensive Care Unit (NICU) 4) (A) Percent of infants who are ever breastfed and (B) Percent of infants breastfed exclusively through 6 months 5) Percent of infants usually placed to sleep on their backs 6) Percent of children, ages 10–71 months, receiving a developmental screening using a parent-completed screening tool 7) Rate of hospitalization for non-fatal injury per 100,000 children ages 0–9 and adolescents ages 10–19 8) Percent of children ages 6–11 and adolescents ages 12– 17 who are physically active at least 60 min per day 9) Percent of adolescents, ages 12–17, who are bullied or who bully others 10) Percent of adolescents, ages 12–17, with a preventive medical visit in the past year 11) Percent of children with and without special health care needs having a medical home 12) Percent of children with and without special health care needs who received services necessary to make transitions to adult health care 13) (A) Percent of women who had a dental visit during pregnancy and (B) Percent of infants and children, ages 1 through 17 years, who had a preventive dental visit in the past year 14) (A) Percent of women who smoke during pregnancy and (B) Percent of children who live in households where someone smokes 15) Percent of children 0–17 who are adequately insured

NPMs chosen by Kentucky Title V #2  C-section rates #4  Breastfeeding rates #5  “Back to sleep” rates #7  Rate of hospitalization for non-fatal injury #8  Physical activity for children #12  Transition (children in general and CYSHCN) #13  Dental visit (pregnant women and children under 17) #14  Tobacco (use by pregnant women and exposure re: children under 17)

The NPMs and CYSHCN Not all are specific to CYSHCN All are relevant to CYSHCN Ex: reducing the rate of tobacco use in the home Ex: reducing rate of very low birth weight infants

System of Care 10

Indicators of a Well-Functioning System Families are partners in decision-making, CYSHCN have access to comprehensive care through the medical home, CYSHCN have adequate insurance/financing to pay for needed services, Children are screened early and continuously for special health care needs, Community services are organized for easy use by families, Youth with special health care needs receive services needed to transition to adult health care, work, and independence.

Six Quality Indicators of a System of Services Individuals & Families Families as Partners Transition to Adulthood Adequate Insurance Community- Based Services Early, Continuous Screening Access to Medical Home State & organization systems

Where Are We Now? Family Partnership in Decision-makingStatus: 70% Access to Medical HomeStatus: 43% Access to Affordable InsuranceStatus: 61% Early and Continuous ScreeningStatus: 79% Access to Community Based Services Status: 65% Services to Transition to Adulthood Status: 40% ( The National Survey of Children with Special Health Care Needs (NS-CSHCN )

Overall System of Care Indicators 20 % of CSHCN ( 0-11 years) received care in a comprehensive system (U.S. range 13-26%) - Only 16% of CSHCN w public insurance 13 % of YSHCN (12-17 years) received care in a comprehensive system (U.S. range 8-20%) -Only 6% of YSHCN w public insurance Youth with a medical home are twice as likely to receive transition services 14 The National Survey of Children with Special Health Care Needs (NS-CSHCN )

The importance of access to care Indicator 4.1a: During the past 12 months/since [his/her] birth, did [child name] see a doctor, nurse, or other health care professional for any kind of medical care, including sick-child care, well-child check-ups, physical exams, and hospitalizations? No, did not receive any type of medical care Yes, received any type of medical care Non-CSHCN% Pop. Est.7,877,40051,145,499 CSHCN% Pop. Est.859,94113,717,709 Source: National Survey of Children's Health. NSCH 2011/12. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/26 from

Measures 16

Outcome measure #1: Families are partners in decision making Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Outcome successfully achieved Outcome not achieved Nationwide% Pop. Est.7,733,1493,269,920 Kentucky% Pop. Est.143,75151,589

Select barriers to OM #1 that impact access to care Lack of awareness of the benefits of family/professional partnerships on the policy level and shared decision-making on the individual level Lack of cultural and linguistic humility/competence Lack of resources to support family/professional partnerships (stipends, time, champions)

Potential strategies to improve access to care under OM #1 Pediatric Practice Enhancement Project (PPEP) – model peer navigation program based in Rhode Island medical homes Promising Practices in Cultural Diversity – best practices identified by the National Center for Family/Professional Partnershipshttp:// ncfpp.org/activities/promisingpractices/ ncfpp.org/activities/promisingpractices/ Partner with the Kentucky Family-to-Family Health Information Center (F2F)

Outcome measure #2: Care received within a Medical Home Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Outcome successfully achieved Outcome not achieved Nationwide% Pop. Est.4,613,6616,126,183 Kentucky% Pop. Est.94,78094,144

Select barriers to OM #2 that impact access to care Inadequate reimbursement for labor- intensive primary care, including care coordination Primary care provider shortages, particularly in rural areas Time constraints, especially in a fee-for- service environment

The Care Coordination Conundrum and Children with Special Health Care Needs – a policy brief from the Catalyst Center with recommendations for adopting alternative payment models to support care coordination Spread of promising practice models identified by the National Center for Medical Home Implementation (NCMHI) g-Practices-Archives.aspxhttps://medicalhomeinfo.aap.org/practices/Pages/Promisin g-Practices-Archives.aspx Building Your Medical Home: An Introduction to Pediatric Primary Care Transformation – toolkit developed by NCMHIhttps://medicalhomes.aap.org/Pages/default.aspxhttps://medicalhomes.aap.org/Pages/default.aspx Potential strategies to improve access to care under OM #2

Outcome measure #3: Adequate public/private insurance Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Outcome successfully achieved Outcome not achieved Nationwide% Pop. Est.6,626,9994,316,749 Kentucky% Pop. Est.128,70663,861

Select barriers to OM #3 that impact access to care Uncovered or inadequately covered services like habilitative therapies, medical foods/formulas and specialty care Unaffordable cost-sharing (co-pays, co-insurance and especially high deductibles), resulting in financial hardship and medical debt Narrow provider networks that limit access to specialty providers and impact continuity of care

FAQs about the Family Opportunity Act’s Medicaid Buy-in Option – a strategy that allows families to access Medicaid as a source of supplemental coverage for their CSHCN State Financing Strategies for CSHCN: a collection of model programs and policies in 4 areas: covering more kids, closing benefit gaps, paying for additional services and building capacity center/financing-strategies/ center/financing-strategies/ Potential strategies to improve access to care under OM #3

Outcome measure #4: Early and continuous screening Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Outcome successfully achieved Outcome not achieved Nationwide% Pop. Est.8,641,0812,353,838 Kentucky% Pop. Est.154,25539,240

Select barriers to OM #4 that impact access to care Administrative burden of screening on providers Lack of knowledge about community- based resources for follow-up (peer mentoring and navigation, for example) Inadequate reimbursement

The Affordable Care Act and Implications for Early Hearing Detection and Intervention: Changes, Challenges and Opportunities with-hearing-needs/ with-hearing-needs/ The Bright Futures Tool and Resource Kit provides forms and tools to support well-child visit recommendations kit/Pages/default.aspx kit/Pages/default.aspx Kentucky Metabolic Foods and Formulas Program website, including a list of state mandated benefit laws Potential strategies to improve access to care under OM # 4

Outcome measure #5: Access to community-based services Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Outcome successfully achieved Outcome not achieved Nationwide% Pop. Est.7,180,8263,845,929 Kentucky% Pop. Est.124,02470,487

Select barriers to OM #5 that impact access to care Lack of care coordination resources, including financing for the service and cultural brokers Fragmented/siloed systems of services and supports Lack of culturally responsive community- based services and supports

Family Voices’ diversity and cultural competence portfolio of tools, trainings and partnerships Health Care Coverage and Financing for CSHCN: A Tutorial to Address Inequities Potential strategies to improve access to care under OM #5

Outcome measure #6: Services provided necessary for transition Source: National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 4/27/16 from Outcome successfully achieved Outcome not achieved Nationwide% Pop. Est.1,708,7992,562,129 Kentucky% Pop. Est.25,86743,945

Select barriers to OM #6 that impact access to care Lack of primary and specialty providers with experience caring for adults with chronic illnesses, special health care needs and disabilities originating in childhood Lack of provider, patient and family knowledge in managing transition Changes in program eligibility which disrupt continuity of care

Starting a transition improvement process using the six core elements of health transition - a practice resource guidehttp:// Get.cfm?id=331http:// Get.cfm?id=331 Educational resources for youth and families: index.cfm index.cfm Potential strategies to improve access to care under OM #6

Access to care: Summary Access to care for CYSHCN is dependent on many elements (partnership, medical home, adequate insurance, etc.) These elements make up the system of services and supports CYSHCN require to grow, learn and thrive Improving the system of services and supports for CYSHCN has potential for maximizing outcomes for women, pregnant women and children in general – what works for the most vulnerable should work for all

Emerging Issues 36

CYSHCN and Managed Care Over half of all insured children are enrolled in managed care Two-thirds of states (32 states) reported mandatory enrollment of at least some CYSHCN into Medicaid managed care 37

Children with medical complexity Account for approximately 6% of all children covered by Medicaid Approximately two-thirds of all children with medical complexity are covered by Medicaid Accounted for 34% ($1.6 billion) of all health care spending for children with Medicaid, in a recent study  Need for determining how the health care delivery system should serve children with medical complexity and the role of federal programs (e.g., Medicaid, Title V)  How will this population of children fare in Insurance Exchanges? 38

Key Challenges/Opportunities Need for defining the population of CYSHCN to be enrolled in managed care Need for systems and processes to identify CYSHCN upon entry into health care delivery systems (e.g., managed care), generally Need for systems and processes to ensure continuity of coverage and access to specialty providers as CYSHCN move into managed care and between coverage types 39

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Conclusions and Some Key Considerations How are efforts to move CYSHCN into managed care addressing their unique needs? What processes, structures and systems need to be in place? How are state health transformation efforts addressing the needs of children with medical complexity? What is the role of other key federal programs that serve CYSHCN (e.g., Title V MCH program, Part C/IDEA, mental health)? How do we ensure full family/consumer engagement in this work? 41

MCHB-funded resources The National Center for Family Professional Partnerships The National Center for Medical Home Implementation The Catalyst Center: Improving Financing of Care for Children and Youth with Special Health Care Needs National Center for Hearing Assessment and Management National Newborn Screening and Genetics Resource Center Got Transition? Data Resource Center for Child and Adolescent Health (National Survey of Children’s Health and National Survey of Children with Special Health Care Needs) Title V Information System (TVIS)

Questions and Discussion

Contact Information Debra Waldron, MD, MPH Director, Division of Services for Children with Special Health Needs Maternal and Child Health Bureau (MCHB) Health Resources and Services Administration (HRSA) Phone: Web: mchb.hrsa.gov Twitter: twitter.com/HRSAgov Facebook: facebook.com/HHS.HRSA