. "5. Care and Caring From Diagnosis Through Death and Bereavement." When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press, 2003.
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tion face greater practical and other burdens, but they—or at least their child—may qualify for Medicaid and for programs to help children with special health care needs. Despite their limitations (see Chapter 7), these programs often offer or provide supportive services beyond those usually covered by private health plans.
Most hospices are attuned to practical as well as clinical issues. In general, hospices have found their greatest acceptance among more educated, middle-class patients and families, although many have tried to reach out to disadvantaged individuals, families, and communities. In trying to “diversify” culturally to serve families from different economic, religious, and cultural backgrounds, they may identify a wider range of practical needs.
Assistance from friends, neighbors, employers, and others in the community can make an important difference in the experience of families living with a child’s serious illness. For example, having a friend or neighbor offer to stay with a child’s siblings can make it less complicated to visit a doctor with the ill child. Having someone baby-sit the ill child may allow parents a few hours respite to have a quiet dinner or to give other siblings special attention. Formal respite services that provide professional or supportive care at home or at a residential facility provide stressed families a greater opportunity to regroup physically and emotionally, whether this involves a short vacation or taking care of neglected household and business matters. Such services, which are central features of British child hospices (Goldman, 1999; Rushton, 2001), are limited in this country.
Employers can help parents whose child has a life-threatening medical problem by being flexible about working hours and leave (including provisions for coworkers to contribute leave). Employee assistance programs offered by many larger employers may help identify counseling and other resources for employees or family members. Employer-sponsored health insurance is critical to families, notwithstanding limits in coverage of pallia-tive and hospice services. Employers will sometimes agree to waive limits in their health plans on benefits for children with life-threatening medical problems. (See Chapter 7.)
Teachers and other school personnel can likewise contribute by making practical and creative arrangements that help a child stay in school. Going to school maintains a dimension of normal life amidst much that is decidedly not normal.4
Since the 1960s, federal legislation and court decisions have essentially established that states must provide free public education and related supportive services for children with disabilities, regardless of the severity of their disability. In 1994, more than 5 million children were receiving special education services as provided for by federal legislation. (For a summary of the relevant statutes and judicial decisions, see NICHCY, 1996.)