Impact of 1001 on One Family (12 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.

My daughter was born at 23 weeks 4 days. She has surpassed all the odds that were laid out for her at birth. She did suffer from a level IV intraventricular hemorrhage at birth. Because of this she does not sleep hardly at all. Her neurologist has done all they know to help her, but nothing works. She is fed through a GJ tube. It is VERY important that I continue to have our Medicaid waiver that enables us to have nursing in our home. This way it allows me to sleep and function during the day. I have Multiple Sclerosis myself and it is imperative that this continues. This would be detrimental to our family. My husband works full time and we have limited support from family and friends. There is no way we could pay for this nursing without our Medicaid waiver. Also, with her medical needs we cannot just have someone off the street such as a babysitter care for her.
Also, my daughter desperately needs to continue her therapy. Her therapy has already been cut from PT twice a week, OT and ST once a week to PT and OT once a week. The many changes that were implemented this year has greatly impacted us as well. She had to switch therapists because their company was not approved with our county. She had one of the therapists for 2-1/2 years. She is not doing as well with this new physical therapist because she does not know or trust her. It will take time for her to adjust to these changes and she ages out of First Steps in July.
Another thing this waiver does for us is allows financial help for the equipment she needs. I am not sure how we would be able to get the much needed stair lift and wheelchair without this assistance. These items are very expensive and a low to middle class family cannot afford this. Our private insurance told us these items were considered a luxury not a necessity.
This would impact so much for our family and so many of our friends with special needs kids. I truly believe cutting the Medicaid waivers has gone too far and someone needs to stand up and help our children. My husband works but his income is not enough to provide for a family of three with a specials needs child. But if this passes his income with prevent us from getting the help we truly need.
Section 139 of HB 1001 goes too far and needs to be removed. Children need access to Medicaid Waiver services. Families need supports to help them care for their children at home. Children should be able to live with their families, not in nursing homes and group homes. Please think about people instead of just money. These children did not ask for this nor did the families. Studies have shown that children thrive in the home. I cannot imagine having to put my daughter in an institution because she does not sleep. She has such a wonderful personality and we love her so much. She offers so much to our family. But as sole caregivers, we do need a break and for our family that is 8 hours of sleep.

Amanda Griffith