Sarah’s daughter, Jessi, was diagnosed with tuberous sclerosis complex disorder at five months old. Her condition causes epilepsy, autism, kidney disease, developmental disabilities, development of tumors and cysts on all of Jessi’s organs, and a lung condition. Sarah has been caring for Jessi for 21 years.
Medicaid has supported Sarah throughout her entire care journey. Jessi’s condition can cause her emotions to change on a whim, and sometimes she can act out or get violent. When Jessi was a child living at home, Sarah was able to use respite care that allowed her a physical and mental break from providing constant care for Jessi. These breaks helped Sarah decompress and do things for herself. Medicaid also covers the majority of Jessi’s medications that without insurance would cost nearly $20,000 a month.
Sarah has been able to use Wisconsin’s home and community-based service programs to help care for Jessi. When Sarah had surgery, a direct care worker came to her home to help both her and Jessi get dressed when Sarah was unable to do so. Sarah was also able to leverage self-directed services that allowed Jessi’s sister, Grace, to receive a small stipend to support Grace caring for Jessi. All of this meant Jessi had someone who she knew and trusted helping provide her needed care. Without all this support, Sarah would have been unable to keep her job as a nurse.
Currently, Jessi lives in an adult family home close by to her family, something Sarah has been able to afford because Medicaid provides a team to help with the financial negotiations. Sarah still manages all of Jessi’s medications and doctor’s appointments. Medicaid has also allowed Jessi to consistently keep her current care team.
Medicaid has been a vital lifeline to not only keeping Jessi alive but to supporting the family in their care journey. If Medicaid were cut, the total cost of Jessi’s care would bankrupt the family within six months, and Sarah would not be able to afford to keep her daughter alive.
“There is no humanly possible way I can keep my daughter alive if you cut Medicaid. Her care and her medications alone would bankrupt us in less than 6 months. Do you think people like my daughter don’t matter? Am I just supposed to sit and watch her die?”