ABSTRACT
Introduction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 History of Life Care Planning. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 Life Care Planning Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 Unique Considerations of Pediatric Life Care Plans . . . . . . . . . . . . . . . . . . . . 62
Family Response to Development and Transitions . . . . . . . . . . . . . . . . . 62 Long-Term Living Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64 References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Appendix 1: IALCP Standards of Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 Appendix 2: Bibliography of Life Care Planning and Related Publications
2001 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72 Appendix: 3 Life Care Planning Resources Organizations . . . . . . . . . . . . . . . . 79 Appendix 4: The Basic Tenets of Life Care Planning . . . . . . . . . . . . . . . . . . . 82
The Health Resources and Services Administration’s Maternal and Child Health Bureau currently defines those children with special health care needs (SHCN) as “all children who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.”
