I have one additional comment that I would like to add regarding the family for whose child I provide nursing care.  As both parents have to work, they are already using 1 respite hour each day during the week, just so that they can both work and get enough sleep each night.  They have a day nurse who works 8 hours and the night nurse during the week works 9 hours so that they can also have time in the morning to take care of their other child, getting her ready for school, before they head off to work.  This leaves them taking care of their child for 7 hours each day  and using over 250 out of their 360 respite hours just to maintain their work schedules.  If you would consider the average parent of a healthy child who works sleeping about 8 hours per day, and working 8 hours per day with at least 1-2hours of commuting time, that parent only takes care of their child for perhaps 6-7 hours per day, or even less if the child is going to bed earlier.  I don't understand why the working parents of a special needs child have to either get less sleep at night than the average person, work less than an 8 hour day (which is not possible with most jobs), or they have to use respite hours so that they can get 7-8 hours of sleep.  If the regulation were changed so that they would receive 112 hours of nursing care per week, this family would be able to use a few extra hours during the week and a few hours less on the weekend so that they can manage their work schedules and take care of their family, without cutting into the respite hours that they so desperately need.  Thank you for your consideration.  Sincerely, Carrie Thompson, RN.