Impact of 1001 on One Family (10 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 writing about SB1001, specifically section 139 and the Medicaid Waiver provisions. The language that allows FSSA to abandon the current policy of disregarding parental income in order for a child to be eligible for Medicaid waivers and the Medicaid health care coverage must be removed from this bill. I understand the need to cut costs and the authors are trying to target the “Jim Irsays” of the world, but frankly, the Jim Irsays are not really an issue because they would never drop private insurance in favor of Medicaid only coverage anyway! Private insurance typically offers far more coverage and choice than Medicaid, so it would be foolish for people to drop it simply because they got a waiver. The people who do drop their private insurance are doing it because their own insurance is unaffordable for their family (which is clearly not an issue for Mr. Irsays or his cohorts) or they work for a small business and having their child covered makes their company’s insurance costs skyrocket, therefore making insurance unaffordable for everyone else in the company. I personally know one family this has impacted, and the employees at her company were very grateful that she made that choice and they were able to purchase insurance again.

We have three kids on the waiver, and we keep our private insurance. Outside the $13,500 per year of waiver services, the only thing Medicaid has ever paid for is some adaptive equipment for Zach. Our private insurance covers at a much higher rate than Medicaid, so they do not pay out on our medical services. Having Medicaid as secondary insurance simply removes our liability for co-pays and deductibles for the covered children, which is a huge help to us and a blessing to the many families whose children are hospitalized repeatedly, use high cost medical services, and require expensive medicines, medical supplies and formulas to manage their conditions.

Investing $13,500 per year for the past several years in our children will eventually pay HUGE dividends for our state. We have strategically used our Medicaid waiver services to help with the development of life skills for our children and for social skills training, which the two on the autism spectrum desperately needed. As you may remember from my earlier letter about voc rehab services, our quadruplets are now 17 years old and will be moving into the adult service system in a short 18 months. The waiver has allowed them opportunity to go out into the community and work on life skills like shopping, budgeting, accessing government offices, banking and other critical tasks of daily living. While we certainly work on these things as parents, we are two people with five children, managing home, work and family. They need lots of repetition and practice in multiple environments in order to learn these skills, and it takes much more time than it does for the average teen. I am confident that having the respite providers work on these skills weekly with my children has made a huge impact on their ability to live as independent adults in a few short years.

The other service that has been critical to their success has been the social skills training available via behavior services from the waiver. My son who never used to make eye contact with anyone or speak to anyone outside his immediate circle of family and providers is now a member of a service club at school, working at CVS as part of his on the job training class, and making huge strides in his ability to interact with new people and advocate for his own needs. The other son is working as an athletic trainer or team manager with the sports teams at school, which he would have NEVER done before, and showing an interest in his community, as you saw when he was a page for you last month. These skills developed through waiver services will assist both of our kids on the spectrum to be employable after high school. I fully expect they will become active productive taxpaying citizens, which is worth far more to the state of Indiana over their lifetime than the $13,500 a year they’ve been getting for the past few years. Even if I was Jim Irsay, it seems like this would be a wise investment.

I hear from statehouse advocates that you are listening to our concerns and passing them on to the senate leadership on this issue. I thank you for your efforts in this area and hope you will work to completely remove this language from the bill. If this area is to be explored in the future, it needs to be done in a deliberate thoughtful way, where adequate time is available for thorough analysis of the true impact on families and children with disabilities, with consideration given for the difference the services make on the future independence and employability of these Indiana citizens when they become adults.

Denise Arland
Greenfeild Indiana