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12.8% of children nationally have a special health care need.

Understanding the Issues

Children with chronic conditions and/or special health care needs, along with their families, experience significant unmet needs that have been well documented in evidence-based research.

The impact of a chronic condition on a child and his or her family is truly significant and can be overwhelming.

Research shows that in the United States, more than 1 in every 8 children has some type of special health care need.

  • These children use the health care system much more often than other children do.
  • 18% of the children miss 11 or more days of school each year due to illness.
  • 20% of their families experience financial problems due to the child's condition.
  • The children often require specialized services and therapies, home health services, durable medical equipment, family therapy, early intervention services, special education and/or social services.

Children with chronic conditions and/or special health care needs

CHILDREN WITH SPECIAL HEALTH CARE NEEDS are children who have been given significant challenges to their survival, their health or their quality of life.

Families find that negotiating the health care, social service and education systems for their child is a maze that is often challenging, confusing and overwhelming. Families face the burden of coordinating visits from multiple providers, sometimes in multiple institutions.

Families, physicians and providers report that the current system often lacks coordination, communication and collaboration.

Families report:

  • Very limited coordination among all providers.
  • Providers do not always communicate their treatment plans with one another.
  • Feeling that they are not valued as partners in the care of their children.
  • Physicians are not always spending enough time with the children and are not always listening closely enough to the child or the family's concerns.

Physicians report:

  • Not having adequate knowledge/experience related to the specific community support services available.
  • Not always having the time or comfort level to provide care to children with complex special needs.

Community-based Service Providers report:

  • Not having adequate knowledge of other local providers and their services, with no time to learn about them.
  • Lack of collaboration and communication among all of the systems working with the child and family.

Shattered Dreams

photoMany superb federal, state and community organizations and agencies specialize in caring for or assisting children with chronic conditions and/or special health care needs. These agencies are designed to help families take one specific step in the process of caring for the health and well-being of their children, but often not considering the whole picture of the child's care.

In the current system of care for children with special needs, the providers of care don't always communicate (or communicate well) with each other, or with the children and their families themselves. This makes it difficult, or impossible, for parents to navigate the maze of available services.

Coordination needs to take place among all of those caring for children with chronic conditions and/or special health care needs. Specialists, primary care physicians, hospitals, therapists, schools and the parents all need to communicate with one another. It is not only the child, but the entire system that suffers when care is not coordinated.

The complexity of the medical, educational and social service systems that treat these children can be overwhelming. Yet these are not the only obstacles facing the families. They must also struggle with transportation issues, transition concerns, equipment availability, health insurance coverage and pharmaceutical costs. These issues collectively contribute to the complexity of caring for a child with a chronic condition in a coordinated manner.

When collaborative, coordinated care does take place, the children, their families and the system as a whole all significantly benefit:

  • The children maximize their health potentials, miss less school and are assets to the community.
  • Parents miss less work and feel empowered to assist their children in reaching their goals.
  • The system — the community as a whole — will use its precious time and financial resources in a more efficient manner to care for these special children.

Through care that is coordinated, children with special health care needs obtain the quality of care they deserve and gain more hope for the future—theirs and all of ours.