Lighting the way for children with medical complexity
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Even with the best intentions, the words or actions of others can sometimes miss the mark and in effect cause more harm than good and leave the family feeling misunderstood, overwhelmed or even hurt. This doesn’t usually come from a lack of care but rather from discomfort, uncertainty or the desire to “make it better.” Knowing and internalizing this can help you respond with grace and hopefully, by communicating these tips to your team, you can help your supporters approach your circumstances with more awareness. In this final section, you will find many printable resources to complete and distribute so that everyone is on the same page.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
