Policy and action advocating for children’s health issues comes in many forms.

All these groups impact the ultimate delivery of care to children in our country.

Care coordination has emerged as one of the most important aspects in the care of children with special heath care needs yet when physicians are polled they indicate lack of staff and community/government agency services as a common reason for not providing care coordination services (Gupta et al. 2004). Advocacy and policy to support workforce and program development will be necessary as policy inclusion to enable widespread care coordination adoption across pediatric practices.

As a parent or healthcare professional, the important message is understanding how the family situation can be the impetus for change, so it is important to speak out. The follow-up point is that there is advantage in promoting your cause/issue with groups of like-minded people. In grassroots efforts to impact policy, whether at your school system, state or the national government level, involving people to contact those in power over the issue (school board, state or federal legislators) do influence action. Since others have mastered the art of lobbying and media contact, it is best to use connections with family and professional advocacy groups to support your cause in addition to your own family and local contacts. This chapter will briefly introduce existing national and state legislation impacting coordination of care for children in the U.S. as well as pointing to connections for advocacy groups.

A prime example comes from the work occurring through the Assuring Better Child Health and Development (ABCD) Program. The Commonwealth Fund has funded ABCD programs across states to positively impact delivery of early child development services for low-income children and their families by strengthening primary health care services and systems support. The experience with implementation illustrated that policy improvements were more successful when they were integral to the initiative and were part of the initial start of a project. The other barometer of success is support from senior state government leaders (Kaye and May 2013).

At the national level, policy most recently impacting care coordination is the Patient Protection Affordable Care Act (www.​HealthCare.​gov/​laresources/​index.​html). The Affordable Care Act (ACA) impacts children and youth through removal of lifetime financial limits, the facilitation of 2.5 million young adults in maintaining access to coverage (by being able to stay on their parents insurance plan), and the emphasis of care coordination within the language of the bill specific to models of care, care transitions, and access to needed services. The ACA also contained provisions for the Centers for Medicaid and Medicare Strategies (CMS) to implement an Innovation Center, supporting research into new health care models that strengthen quality and support innovative strategies to address chronic disease and vulnerable populations. The key goal of the Affordable Care Act is improved population management using value-based strategies inclusive of care coordination (Llewellyn 2013). One item missing in the ACA, relevant to care coordination is the definition of the qualifications of the people providing the coordination services. To protect the public from inexperienced or uninformed people engaging in care coordination activity at the potential financial and safety risk of children, clarification is necessary.

There are many important pieces of national legislation that impact coordination of health care for children. The Health Insurance Portability and Accountability Act (HIPAA) removes the preexisting condition requirement from health coverage and protects the privacy of health information by requiring security measures of people and entities that maintain health information. This includes anyone conducting care coordination activity. Healthcare information can however and should be exchanged between healthcare providers associated with a child’s care coordination. Specifically, the George Washington University School of Public Health and Health Services (SPHHS) has researched the exchange of healthcare information as it relates to potential barriers or assists of health information laws and health system improvements for children and adolescents under Medicaid’s Early and Periodic Screening, Diagnosis and Treatment (EPSDT) benefit. What they found was that information on treatments and screening is supported without additional consent across providers to aid in seamless care for children (Perna 2013).

There are five main pieces of federal legislation addressing both education and health of children requiring care coordination beyond the legislative provisions for health coverage specified under Medicaid and State Children’s Health Insurance (CHIP) Programs and the associated State Waiver programs. Some of the Waiver programs require efforts of care coordination, however all Medicaid and CHIP recipients can ask for, and receive, case management services. Acknowledging that education and health are intertwined in the total well-being of the child, the Individuals with Disabilities Education Act (IDEA), No Child Left Behind Act (NCLB), Section 504 of the Rehabilitation Act, American Disabilities Act (ADA) and Assistive Technology Act (ATA) seek to define and protect rights of a child to receive education and health.