Impact of 1001 on One Family (11 of thousands)

FV Indiana members are sharing what the impact of proposed changes to Medicaid Waivers will be in their lives. We share their stories, and encourage each of you to continue contacting your Legislators.

I am a foster parent that is in the process of adopting a medical fragile 2 yr old. He was injured in a car accident due to neglect of his bio mother at age of 13 months he had occipital dislocation ( where his skull came off of his spinal column) he is now a spastic quad, has autonomic Dysreflexia, neurogenic bowel and bladder, gtube, he is on full life support. He weighs 31.5 pounds and we live in a two story house and carry him up and down the stairs several times a day so that he can be with the rest of the family. If I did not bring him home with us they wanted to put him in a rehab facility. Mind you he already had a decub ulcer on the back of his head from the hospital stay of only 1 month. He would have went to that facility and laid there to die. I have worked in those facilities and I know how it is. Staff are over worked and under paid and it is just a job to most of them. He would not have gotten the love, attention and proper care and therapies that he needs. Since we did bring him home he has started to move his shoulders, arms, feet, has better control of his head and is learning to talk and eat by mouth. How amazing is that. He has so many medical issues and he still manages to smile, laugh and have the brightest eyes ever. He is so loved and deserves everything we can give him. I realize the state needs to make cuts but there are places that cuts can be made instead of taking from our children and our special needs adults also. I am also a nurse and I provide nursing care for individuals in the Medicaid waiver homes. I have worked in my job for 6 yrs now and it is the most amazing job I have ever had. There are individuals that don't have family involved except our staff and our families. So they don't have the opportunity to be at home with their parents so the waiver home helps them. Most of them came to us from institutions and had a lot of behaviors, now they have learned to live a normal life. They can grocery shop, do their own laundry, cook with assist. They have learned from being out in the homes. Why would anyone want to take that from them. The waiver program gives us the chance to care for our son at home. My husband and I both work full time to support our family so our son gets nursing care while we are at work. When I get home I continue to do all the household duties and I care for my son who has treatments every 3 to 4 hours even through the night. I was offered nursing care while I sleep and I denied it. Please don't take away the opportunities that he can get once he is on the waiver. He is still on the waiting list he is number 1024 out of 5500 on the A and D waiver waiting list. He has already had his therapy decreased because of state cuts so I pay approx 500 dollars a month out of pocket for additional therapy for him. Let's not take more from this precious child.
I have started a petition on line go to www.thepetitionsite.com then go to find petition and it is called Medicaid waiver program. Then click on website and sign it and repost to any facebook sites, emails or twitter. We need all the help we can get. Please sign. I am printing them off and taking it to the state building on Tuesday. Please help everyone this is for our children.
Tina Brown