Impact of 1001 On One Family (one 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.

We are a close family of five who feels very strongly that Section 139, an amendment introduced Monday to HB1001 concerning Medicaid waivers, would harm our family and many others. My husband Brad is a middle school science teacher who has a second job teaching online chemistry from home, and I work three part-time jobs. We have pieced together this life to make it possible to support our son Kyle, now 11, who has Down syndrome, autism, is a leukemia survivor, and has a primary immune deficiency, recurrent gastrointestinal infection, and a few other special health care needs. We have two other sons at home, as well. We pay for primary health care insurance through my husband’s employer that is the first payor for Kyle’s many medical and therapeutic services. In the year before Kyle received the aged & disabled waiver (then called the medically fragile waiver), our out-of-pocket medical expense for co-pays, deductibles and uncovered care was $13,000.
The waiver Kyle has now covers these secondary costs and also provides attendant child care so both of us can work. It even has allowed me to finally be able to consider full-time employment. Under the current income estimations in the Section 139 amendment to HB1001, my family income exceeds the suggested income limit for a waiver family, and my son would lose his waiver. If Kyle lost the waiver, I would have to quit working, losing half our income and adding an average of $13,000 per year in expenses (if it’s a good year with no surgeries and hospitalizations, which is by no means guaranteed). This would quickly devastate Kyle, reduce his services drastically, and put a tremendous financial burden on our family, including our other two children.
The language in the amendment also suggests calculating budget neutrality on an individual rather than an aggregate basis. By calculating waiver budget neutrality (making sure waiver services are less expensive than institutional care) on an aggregate basis as we do now, it makes sure total expenditures are reasonable and allows high-need and low-need recipients to be served. By calculating this on an individual basis as the amendment is written, the waiver costs of individuals with high medical needs may exceed the cost of an institution, making them unable to be served on a waiver and thus forcing them out of their homes and into large institutions. This situation could most definitely affect my child and others I know.
These are some of the ways Section 139 can affect a little boy named Kyle and his family, as well as his friends Daniel, Jeremiah, Maison, McKenna, Joe, and many others. Other language in the amendment is also concerning, can be interpreted in many ways, and needs to be better defined. All of these issues can be dealt with in FSSA on an administrative level not requiring legislation. My family and many others are willing to help look for savings in cooperation with FSSA and disability service providers, but the sudden insertion of Section 139 into HB1001 has given us no opportunity to do that. For all of these reasons, I am respectfully but urgently asking our state senators and representatives to remove this amendment.
Beth DeHoff, Indianapolis