I currently work for a homecare agency and provide skilled nursing to a child who is authorized 16hrs/day of nursing care. The child I care for is on a ventilator and needs constant monitoring of his respiratory condition and of his ventilator.  He requires constant nursing care whether it be suctioning his trach, chest PT, venting his GT(gastronomy tube) and feeding via his GT, emptying his ileostomy bag, repositioning, passive range of motion, seizure monitoring, medication administration, etc.  He needs total care.  The parents of the child I take care of both work full-time out of necessity.  When a nursing shift is missed from a nurse calling out sick, the parents have to miss work for 8 hours, leaving them caring for their child for 16 hours that day.  Not only do they not have the opportunity to make up hours with their own job the next day, but they also cannot rest more the next day because they are not allowed to make up the missed shift the next day, or any day thereafter.  If they want to have the hours back, they are forced to use respite hours which they have already carefully planned out.  360 respite hours per year may sound like alot of hours but it is actually less than 7 hours per week if it is divided out evenly over a calendar year, which is less than a full shift.  During the winter when nurses tend to call out sick most often, if more than one shift is missed per week, the family ends up using respite hours that they may have allocated to another week, leaving them with none for  that  future week.  They find themselves cancelling special famliy events because of the uncertainty of whether or not they will have enough respite hours left.  I do not think that it is fair that the family has to use their respite hours, hours they need for their own much needed recreation, to make up time when a nurse misses a shift.  If the regulation concerning missed shifts were changed to allow the families at least 72 hours, or even a week,  to make up their shifts, they could use their regular nursing hours to not only catch up on lost sleep, but also to catch up on their work obligations, without sacrificing much needed planned family recreational activities.   As the regulation stands now, families with 16 hours of nursing/day have no opportunity to make up any missed hours whatsoever.  Please reconsider this regulation.  A change to permit families to have 112 hours per week, instead of 16 hours per day, would not change the total hours the family receives,  but it would just give them the ability to adapt their schedules when nurses call out sick and it would give more freedom to use the hours as they need them for their individual lives.  Thank you so much for your consideration.  Sincerely, Carrie Thompson, RN