I get PDN care for my kid but I am his 24/7 attendant as his needs go far and beyond a gtube feed. He doesn’t have speech, has a genetic deletion and intellectual disability along with a vesicostomy, strabismus, the list goes on. Apart from running to therapies 4 times a week, I have to make sure he is engaged in play that helps his brain grow, practice his OT and speech strategies 24/7, help him develop self-feeding skills that can take up to 1 hr per meal a day. I feel that these goals that we set for him are in direct contradiction to the goals of the current caregiver (nurse). Also, it is not in their job description. My child hates being around the nurse and runs to me every time he sees me. He can not tell me how he is being treated when I am not around but hai attitude says it all. I want to be here for him without having to give up an opportunity to make ends meet. This is only possible if this benefit isn’t taken away.