Impact of 1001 on One Family (7 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, Hailey, was born ten years ago. Everything about her appeared to be “typical” except that she was extremely slow eater. We took her home and did the best that we could. Her feedings would take hours to complete and she did not progress very quickly. First Steps began to assist us and we saw small improvements. She underwent many tests at this time because we did not have a diagnosis – we just knew that something was not right. Her growth was extremely slow, she was labeled failure to thrive, her milestones were miles away. We continued on, and because she did not have a diagnosis and because the range of normal is so wide at this young age, we incurred the medical bills using our own private insurance and out of pocket.

Hailey finally received a diagnosis of 14q- chromosome deletion syndrome when she was age 18 months. We were partially devastated and partially relieved that we finally had an answer as to why things were different for her. Of course, it is rare for anyone to have this and we found a few families around the globe with her condition. We signed up for the DD waiver and were ecstatic that “someday” we would be able to get the help that we needed. We continued to support Hailey with therapy and medical needs through private insurance and out of pocket expense.

She continued to progress but additional obstacles continued too. She experienced multiple pneumonias and kidney infections and because of her increased medical needs, an advocate suggested when she was 8 years old that we apply for the A&D waiver because there was a shorter waiting list and she would likely qualify. We did and soon we finally had the waiver and more importantly, we had Medicaid to assist with her medical expenses. (We continue to keep her on our insurance too!) It was a godsend – for the first time, we were not overwhelmed with the feeling that we were going to be overcome by the bills and the stress. We finally had the help that we needed.

Hailey had surgery - a MACE procedure done in order to alleviate gastrointestinal issues. It was the first time that we were able to have a procedure that utilized both our private insurance and Medicaid. We were able to be relieved of the stress of the financial responsibilities and fully focus on her.

Needless to say, we have racked up some pretty serious medical bills while on the waiting list. The waiver; however, has been a lifesaver for us. We are fiscally responsible with our waiver. We are paying off the past medical bills now that the waiver is assisting us with the current ones. We continue to carry private insurance in addition to the waiver.

There are a lot of things that my daughter will not do given her limitations. She will likely never be continent. She will not have the muscle control to eliminate her gastrointestinal tract without assistance. She will likely not communicate using words. She will struggle with eating. Most importantly, she will not be place in a nursing home or an institution.

Do you think that Section 139 will save you money? It won’t. It will force my family and families like mine to make tough decisions. Decisions like divorce and bankruptcy in order to be fiscally responsible so that I can provide for my family and my daughter.

Right now, her waiver services and her Medicaid provide me and my husband the opportunity to work, it provides her caregiver has with a job. Those jobs provide taxes and income for us to pay our medical bills from the past. Without it, it would be devastating. I would need to quit my job to address Hailey’s needs. Hailey’s caregiver would lose her job. The new medical bills that we would amass in addition to the ones we are paying on would likely lead us to bankruptcy.

I have read the FSSA comments about Jim Irsay and multimillionaires being able to access waiver services without any charges. They are the very slim minority. My family is not dirt poor, but we are finally comfortable because of the progress that our daughter is making and the progress that we are making in paying off the medical bills from her earlier years while she was on the waiting list. We want to continue that forward movement.

I also agree that there is much to be done to improve the current system. I worked as a waiver case manager. FSSA needs to talk to the stakeholders and providers instead of passing legislation without their input.

My daughter is an amazing person that has struggled and triumphed in spite of the obstacles that have been placed in front of her. She is my inspiration and I shall follow in her footsteps and do the same even if you pass this callousness into law.

Laura