Impact of 1001 on One Family (13 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.

Our son Sam has been receiving services through the support services waiver since he was three years old. He is now twelve years old. Sam was diagnosed with autism just before he turned three. While it was an extremely difficult time for us, we knew we would do all we could to help Sam get the help he needed to learn to communicate and achieve in every way despite his challenges. Sam received therapies through First Steps in our home until he turned three. At that point we were fortunate enough to receive waiver services and thus were able to ensure that Sam got some of the therapies he needed as they were covered by Medicaid. He went to Occupational Therapy twice a week and Speech Therapy once and week as well as Physical Therapy once a week. Our private insurance would not have covered these therapies and we feel certain that much of Sam’s progress was due to this early intervention.

We were also able to get support and guidance under the waiver with the assignment of a case manager who helped us navigate through the confusing decisions we needed to make regarding school placement, therapy choices, etc. Another important benefit of the waiver was respite services. We were able to have qualified staff come several times a week to stay with Sam in our home or take him out into the community. This gave Sam the opportunity to become more social and independent, while also giving us time to have a break from the tough challenges of raising Sam, and giving us a chance to spend time with our other son so that he could have our attention. The Medicaid coverage paid for Sam’s medications; again these would not have been covered by our private insurance. The medication helps Sam to feel less anxious and to better cope with his autism.

It has been nine years since Sam was diagnosed. He has come so far in so many ways, but continues to have many challenges, as do we as his family. We do not know what we would do without the waiver for Sam. If not for the waiver, we would have to pay for all of his therapies and medications out of pocket, along with the doctor visits to his specialists. This is financially impossible. We are by no means wealthy, and we are a single income family as it was clear early on that one parent would need to be home for Sam, taking him to his appointments, coordinating his education, etc. Our family income does not begin to cover the expenses of raising a special needs child. If the waiver services are taken from us, we would both have to work, and even then, it would not be enough to cover the costs of raising Sam. If not for the waiver, we would not have any staff to help take Sam to his many activities and would have no respite as we do not have any family or close friends here who can be alone with Sam. The few hours we have per week when Sam is with his staff is very precious and gives us all a chance to have a break from some tough realities and devote time to each other as a couple, as well as give our other son time that he needs away from Sam.

The waiver has allowed us a chance to raise Sam at home, a right that we feel every parent should have as well as every child. The way we see it, this waiver has allowed us to take care of our son in a loving, warm home, and this is just one of the reasons Sam is doing so well. If we did not have the waiver, we would be forced to make very difficult choices for his care. We would not be able to afford his medications or therapies and might be forced to look for alternative placements for him. The waiver is helping us raise Sam to be as independent as possible, which will, down the line, lessen the burden on the taxpayers of Indiana. All we are asking is to have a chance to take care of Sam; we just need the help of the waiver in order to help him.

Laura Knauff
Carmel, IN
Mom to Sam, a wonderful 12 y/o who just happens to have autism