Please consider modification of the PDN allotment for medically fragile children who receive nursing care through a DMAS waiver program.  My son Benjamin, born at 1 pound was not expected to live.  After a 215 day stay in the NICU in Fairfax Inova, Ben came home on August 15, 2001.  Ben is now just a few days away from his 12th birthday!  While he still has his tracheostomy, ventilator, oxygen, g-tube, and feeding pump....Ben is just a typical happy boy.  Nursing care has been a constant in our lives.  While we have always had private insurance, the waiver program has picked up the nursing, which Ben requires 24 hours a day.  If we had the flexibility to use our 16/day of nursing, weekly, instead of daily, it would make up for the last minute changes in schedules that happens so frequently when using agency nursing.  I was widowed a little over three years ago, and as a single parent, having the flexibility to choose how I see best to use the hours for the care of my child should be an option.  

Please consider this heartfelt request,

Joyce Stephansky

Mom to Benjamin Powilatis