• Teaching Families to Fish: How to Support Families as Care Coordinators

    What would care coordination look like if families received support and training for their role as principal care coordinators for their child with special health care needs? A new issue brief from the Lucile Packard Foundation for Children’s Health proposes a series of attributes that would characterize true family-centered care coordination. 

  • Private Coverage Under California’s Affordable Care Act: How Will Children with Special Health Care Needs Fare?

    High-end “platinum” coverage or basic catastrophic? In just a few months, many families of children with special health care needs must choose their level of health care coverage for 2014 under the Covered California Health Benefit Exchange. To make informed decisions, families will need to understand the benefits and markedly different cost-sharing requirements of the various products to be offered under the exchange plan. In this issue brief, Peggy McManus and Harriette Fox, of The National Alliance to Advance Adolescent Health, assesses the strengths and weaknesses of the proposed plan, and notes issues of particular concern for families of children with some special health care needs.

  • Habilitative Services Coverage for Children Under the Essential Health Benefit Provisions of the Affordable Care Act

    Sara Rosenbaum, the Harold and Jane Hirsh Professor of Health Law and Policy at the George Washington University School of Public Health and Health Services, analyzes how habilitative services may be covered under the Essential Health Benefits Provisions of the Affordable Care Act.  The author notes that states will play a primary role in determining Essential Health Benefits, and that establishing state standards for health insurance plans sold in the individual and small group markets will be key to health policy for children with disabilities.

  • Assuring Children’s Access to Pediatric Subspecialty Care in California

    This policy note, prepared by the UCLA Center for Health Policy Research and funded by the Lucile Packard Foundation for Children’s Health, explores disparities in access to pediatric subspecialty care in California by insurance coverage, geographic location, race/ethnicity, and language. The paper proposes recommendations to ensure adequate access to pediatric subspecialty care.

  • An Enhanced Model of Health Care for Children with Special Health Care Needs in California

    Thanks to medical advances, growing numbers of children now live with complex, chronic health conditions. However, our health care system has not evolved to keep pace with this historic shift. The Lucile Packard Foundation for Children’s Health convened experts to develop an enhanced model for how care could be delivered to children with special health care needs in California.

  • Changing Pediatric Residency Training to Improve Quality of Care for Children and Youth with Special Healthcare Needs

    A large percentage of children with special health care needs do not have an established medical home, but rely instead for primary care on the pediatric subspecialists who treat their specific conditions. These specialists often have not received adequate graduate training to care for patients with complex conditions. This study explores how changes in graduate residency training might improve the quality of care for children with special health care needs.


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