Publications

Kathryn Smith, RN, DrPH, is a nurse care manager in the Boone Fetter Clinic at Children’s Hospital Los Angeles, helping families of children with autism navigate the complex system of care.

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. 

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, which help a person keep, learn or improve skills and functioning for daily living, are essential for many children with special health care needs. Under the Affordable Care Act, states will play a primary role in determining which services are covered. This paper outlines key factors states should keep in mind as they make their decisions.

Yvette Baptiste, executive director of the Eastern Los Angeles Family Resource Center, wants to help parents avoid some of the frustrations she faced with her own children with special health care needs.

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.

One family discusses the joys and stresses of rearing a special needs child, and suggests that life would be better for them if care were better coordinated.

Improving the system of care for children with special health care needs is a goal of the Lucile Packard Foundation for Children’s Health. To provide a basis for this work, the Foundation convened dozens of experts and asked them to imagine a reconfigured system that would produce optimal health outcomes for children and families.

The idea of a medical home was conceived by the American Academy of Pediatrics as a way to assure that children, particularly those with special health care needs, are able to obtain high quality care in a fragmented care system.

The authors combine two approaches to improving medical care for children -- the medical home and “Triple Aim” – and outline a “Triple Aim Medical Home” as a way for pediatric practices to improve care and lower health care costs.