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Special Feature- Local Health Initiatives

Special Feature- Local Health Initiatives

For Parents of A Seriously Ill Child
A Little Compassion Can Go A Long Way

The parents of a seriously ill child obviously have a lot on their minds. First and foremost is the comfort and care of their child; but there are other issues and needs that need to be addressed that sometimes are overlooked or neglected. The situation itself is draining enough without added stresses and unforeseen obstacles. It was with this thought in mind that a special program was designed to address the physical, emotional, psychological and spiritual needs of seriously ill children and their families; and ten years ago CompassionNet was born.
CompassionNet is a unique pediatric palliative care program that was designed by Pat Hefferman, President of Lifetime Care Home Care and Hospice with the support of Excellus BlueCross BlueShield. After having a firsthand experience with having a lack of services for ill children, Heffernan researched and visited care programs across the country, seeking input from bereaved parents, staff, volunteers, nonprofit organizations, doctors, and more. Here are some findings:
• Parents reported that their family crisis began at the time of diagnosis - not when treatment failed or when a terminal prognosis was given or received.
• The prevailed medical model of care did not provide the full range of services and support that families needed.
• Parents often rejected hospice as an option - even when a child was dying - because they feared it meant "giving up."

In the 10 years since its inception, CompassionNet has served over a thousand people in Central and Western New York. The program helps seriously ill children try to live as normally as possible, tries to lessen their suffering and keeps them home during the course of their disease or illness.

"Excellus BlueCross BlueShield is committed to providing help to the family early on in a child's diagnosis," states the chief medical officer, Dr. Marybeth McCall. CompassionNet uses multiple disciplines to address the child's medical and nonmedical needs. Any additional services, equipment, and supplies are all covered in full. CompassionNet gives families what they need without them having to stress over if it will be covered by their health insurance. For added piece of mind families also have access to a medical team and consult with a palliative care pediatrician who focuses on relieving or preventing the suffering of the child.
Lifetime Care worked with Excellus BlueCross BlueShield to develop an insurance benefit that would provide the families with extra support; and has evolved to allow coverage for alternative procedures and extra services that fit the individual needs of the patient and his or her family.
To celebrate 10 years of services and dedication, CompassionNet is releasing an anniversary book. This book is a tribute to the children, families, staff, doctors, and anybody else that has been involved with or touched by CompassionNet.