Chapter 41 Health Care Delivery Systems and Financing Issues Overview Defining children and youth with special health care needs (CYSHCN) U.S. services and supports for these children Medical home and care coordination for CYSHCN Insurance coverage in the provision of health care Public health care programs and benefits to CYSHCN and their families Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Introduction CYSHCN: those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and require special health and related services 14% of U.S. children 22% of U.S. households CYSHCN includes Diverse group of all races, ethnicities, ages, family incomes, and levels of functional abilities Some children with developmental disabilities as well as some typically developing children with complex medical problems Coordinating health care for CYSHCN presents unique challenge to family and health care providers Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

The Concept of a Medical Home All children should be provided comprehensive health care within a medical home: “ongoing comprehensive, coordinated, family-centered care in the child’s community” (U.S. Department of Health and Human Services, 2007) 47% of CYSHCN received care that met medical home criteria: Personal doctor or nurse; usual source of sick and well-child care; no problems obtaining referrals Satisfaction with doctors’ communication with each other, school, related systems; help coordinating care Sensitive, listening doctor spends adequate time with child Parents feel they are partners in child’s health care See the textbook Children with Disabilities, Seventh Edition, for full citation and reference information. Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Importance of Coordination of Care Each child’s needs are complex and may involve many agencies, institutions, and professionals who must work together for comprehensive care plan Benefits of coordination of care: Avoid excessive and deficient services Increased chance of receiving family-centered care Cost savings Decreased hospital stays Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Importance of Coordination of Care (continued) Case management programs Much time coordinating care is not reimbursed by insurance, so insurers, hospitals, public agencies, and private agencies have developed case management programs Purpose and scope of programs vary Important to provide care coordination at community practice (medical home) level; although more expensive, produces better outcomes Medical home index (MHI): higher scores associated with increased organizational capacity, care coordination, chronic condition management, significantly fewer hospitalizations Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Changes in Financing Health Care for Children and Youth with Special Health Care Needs Retrospective payment system Fee-for-service model Little incentive for preventive services Too many acute care services Prospective (prepayment) system Appropriate utilization Well and preventative services Avoid unnecessary services CYSHCN have health care costs as high as three times that of children in general population Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Changes in Financing Health Care for Children and Youth with Special Health Care Needs (continued) Accountable care organizations (ACOs): Group of physicians, hospitals, other providers accept shared responsibility for broad set of medical services to defined set of patients across age spectrum Held accountable for quality and cost of care through alignment of incentives “Teamlet” model: practitioner and medical assistant/health care coach provide care collaboratively with patients Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Insurance Coverage: Public and Private When employer-sponsored insurance declines, public forms of coverage must increase; if this doesn’t happen at the same rate, more children are left uninsured Federal government-funded insurance programs include Medicaid and Children’s Health Insurance Program (CHIP) Some federal and state funding and services for health care also provided by Supplemental Security Income, Maternal and Child Health Bureau’s Title V programs, and Individuals with Disabilities Education Improvement Act (IDEA) of 2004 (PL 108-446) Insurance issues and programmatic variability complicate care plans for CYSHCN Decreasing trend for CYSHCN to have private insurance Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Insurance Coverage: Public and Private (continued) Adequacy of insurance coverage varied as function of insurance type Parents often face financial strains as direct result of having CYSHCN Concern that managed care organizations reduce access to specialty services (especially high-cost procedures) Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

CCS http://www.dhcs.ca.gov/services/ccs/Pages/default.aspx IHSS http://www.cdss.ca.gov/In-Home-Supportive-Services Chapter 1 materials in Children with Disabilities, Seventh Edition, Online Course Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

Wagner’s Chronic Care Model Wagner video https://www.youtube.com/watch?v=K-z6HjRkKSc Care in context of patient- and family-centered medical home Processes and incentives to improve care delivery system Information technology and clinical decision support for clinicians Focus on effective self-management training and support Evidence-based guidelines utilized Increased communication between primary care and specialty care providers Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Additional Services for Children and Youth with Special Health Care Needs Centers for Medicare & Medicaid Services has set of safeguards promoting attention to unique aspects of caring for CYSHCN Some states have “carve-outs” in which child is handled separately from general populations Medicaid waivers can allow home- and community-based services as alternative to institutionalization or continued hospitalization Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved

Looking Toward the Future Measuring outcomes and demonstrating high-quality results increasingly important in justifying services for CYSHCN; requires rigorous collection and analysis of data Affordable Care Act of 2010 should improve access and quality of care for CYSHCN while reducing costs Various innovations hold promise for primary care: ACOs Health insurance exchanges Innovative infrastructure (teamlets, care coordination) Chapter 41 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved