cal expertise. Seriously ill children and their families may, therefore, be more likely than adults to have to travel far from home for treatment. This may remove them from their usual sources of emotional and social support, disrupt parents’ employment, and strain family relationships and finances.

Various programs for children with serious disabilities and other special needs help many families obtain and coordinate care for their child. These programs do not, however, cover all such children, especially in middle-income families, and they often require parents to understand and negotiate complicated eligibility and service requirements. Providers likewise may be frustrated by such requirements and by payment methods and levels that favor invasive medical and surgical procedures, discourage multidisciplinary care, and undervalue the time spent assessing children with grave problems, evaluating care strategies, and counseling and assisting their families.

Many problems facing children with life-threatening medical conditions and their families and many shortcomings in palliative and end-of-life care are embedded in broader social, economic, and cultural problems. Large numbers of children and families lack public or private health insurance and have limited access to health services. Even when a child is covered through private or public insurance; some important services may not be reimbursed. If a child requires care from multiple providers of medical and other services, families may find this country’s fragmented health and social services systems to be confusing, unreliable, incomplete, and exhausting to negotiate. Even physicians, social workers, and others experienced with sick children and programs to serve them are frequently frustrated and stymied by these systems.

In addition, children and young families are disproportionately represented among immigrants and thus are especially vulnerable to misunderstandings related to differences in cultural experiences and values about life, illness, death, and medical or nonmedical therapies. Many families lack the education or English-language skills that make communication and understanding of clinical and other information easier. Even in communities with large immigrant populations, skilled translators and translated materials tend to be scarce, putting the children and families at greater risk of inadequate or inappropriate care. Many immigrants also lack access to Medicaid or job-based health insurance.

Millions of children, immigrants and native born, live with their families in unsafe environments that put them at high risk of intentional injury and certain kinds of unintentional injury. Such environments also can make it a challenge to get a child to the doctor, pick up a prescription, or persuade a home care provider to come into the neighborhood. These broader problems are not the focus of this report, but those seeking to improve



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement