Medical care for my disabled child
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My 4 year old daughter was born with a rare genetic disorder, no living cases, and doctors told us she wouldn't survive to her 1st birthday. She's now 4! For the past 4 years she has received private duty nursing 12 hours a day to care for her. It is medically necessary to have her cared for by a nurse. She has severe apnea (stops breathing randomly) seizure disorder, visually and hearing impaired, cannot walk or talk, has a g-tube, chronic lung disease, immunocompromised (gets sick very easily) and many other disabilities and medical issues.
My husband just served 13 years in the military, just under 10 as a Navy SEAL. He just left the military because his time away was taxing on our family of 5. We just relocated back to our home in CT from California and have been refused the proper care we need for my daughter. We have insurance through my husbands new job, but it does not cover private duty nursing.
The state is refusing to give her medicaid which will cover nursing because they cap off the amount of disabled children they provide services to. She has had this coverage in both states we've lived in (VA and CA). They say it's based off our income and we don't qualify. If I could afford this care, I wouldn't be begging the state to help her. I fear that she will have an panic episode while I'm driving alone with her in the car or any other moment during the day and the worst will happen.
I am not qualified to do all the nursing interventions she has throughout the day. My primary concern is the fact that she stops breathing randomly and needs eyes on her 24/7. I don't understand how we do things the right way, but still get refused services for my medically fragile daughter. I am told CT is the only state that has these harsh rules for disabled children.
My family has served this country and put my husbands life on the line for 13 years and we are refused medical care for my disabled daughter. I put her on the waiting list for a wavier that is based on her income (which is zero) and she is number 168 - a two year waiting list for services, but we cannot wait two years. She needs help now. Please help us keep her at home and get the care she needs and love from her family to grow and thrive. Thank you and God Bless.
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