I live 20 miles from town. Any town.  My closest family is 72 miles away. I have been EOR since my children where able to recieve hours.  For 2 years I was not able to find anyone willing to help my oldest child. Now he is 18. Which helps because his father, who does not live with us can do his hours with no complaints.  But I have 1 child that is 14. She is non verbal, in a wheelchair. Tube fed, needs to be changed, and positioned over and over. She has had 3 strokes. For her finding care has been hard. Her sister does 40 hours, but there is still respite, and the other 40. She needs and requires 24 hr a day care. She has seizures also. So explain to me who would be willing to work for a child with high demands for less than what they can make at cookout, delivering food, and other things.  NO ONE.  Putting more limits on us,  making it so I can not be the EOR if her father works, (even thou he doesn't live with us, he is just a parent), making more work by listing everything we do in a shift, because , a parent would have to do up and beyond the normal,  Having to put hours nto a already broken system.  This list goes on. 

We demand that a parent be able to work, that the other parent be able to be the EOR, that there be no more paperwork we have to fill out. At what point is it about the care of our children?  I, has a parent already covered the other 88+ hours a week. For one child, and 126 for the other.. As a special needs parent there is already less sleep, less everything. Our care is already extraordinary. Please change this. Hear our plea, our needs. Thank you for your time.