An Open Letter to Governor Eric Holcomb:
As parents of medically complex children and staunch advocates for their rights, we write with a sense of urgency and disappointment regarding the recent proposed cuts by the Family and Social Services Administration (FSSA). Our concerns stem not only from the potential harm these cuts pose to our vulnerable children but also from the deafening silence we've encountered in response to our numerous requests for dialogue.
Due to a substantial budgeting error, your administration decided to balance the Medicaid budget by cutting the Medically Complex Warrior Program, a vital lifeline for our families. The proposed FSSA cuts threaten the very support systems our families depend on for the well-being of our medically complex children. The prospect of reduced services and resources strikes at the heart of our ability to provide the specialized care our children require. This program provides stability to our families, whom, due to the enormity of our caregiving responsibilities, find it nearly impossible to work traditional jobs because of the scarcity of home care nursing and services. In November of 2023, our families were also assured by your administration that this program was permanent, not just a COVID-related flexibility.
What troubles us further is the conspicuous silence in response to the hundreds of email, phone, and in-office requests from our families seeking clarity and dialogue. We've been told by your staff that you will not meet with us before seven months' time. Your refusal to engage with our concerns leaves us feeling neglected and grossly undervalued.
We understand the importance of responsible fiscal management and are supportive of creating a robust program with clearly defined procedures and proper oversight that would ensure financial sustainability, but we implore you to recognize the human cost of FSSA's currently proposed cuts. Our children, already facing significant challenges, should not bear the brunt of budgetary decisions that could have severe consequences for their health and futures.
Many of our families provide care to our children that resembles what you'd find in a hospital setting. We deliver skilled services, such as wound care, respiratory support, tube feedings, and blood glucose monitoring. We manage ventilators, supplemental oxygen, and indwelling catheters to administer IV medications and TPNs. We meticulously administer dozens of medications daily, all to maintain the stability of our children. Under the umbrella of the attendant care program, our families also provide "extraordinary care" for our children. We perform tasks for them that their same-aged peers don't typically require, such as lifting and transferring between wheelchairs and other equipment, lifelong diapering, bathing, and dressing them. We transport and operate adaptive devices so that our children can enjoy their community. We carefully plan, travel for, and attend countless medical appointments. If we're lucky, we're able to navigate around the myriad of medical to-dos to create core memories with our children... because for many of us, our children have limited life expectancies, and some day, those memories will be all we have.
Our families have been left without proper answers from you or the FSSA, and we're troubled by the lack of impact studies or data showcasing the feasibility of the suggested program alternatives. While your administration has proposed transitioning to Structured Family Caregiving (SFC), we question whether the FSSA has collected data from service providers to ensure sufficient statewide coverage. SFC, designed for geriatric patients, does not align with the needs of medically complex pediatric patients and forces unskilled respite coverage, a risk our families cannot bear. Additionally, SFC strips these children of access to other services they desperately need.
Governor Holcomb, we respectfully request that you pause these proposed cuts and engage in open, transparent dialogue with our community. We invite you to meet with some of the families you are impacting, to witness firsthand the critical role we play in saving the state of Indiana millions of dollars a year.
Our children's lives hang in the balance, and their voices and ours deserve to be heard and acknowledged. We anxiously await your response and a commitment to ensuring our medically complex children have the support and care they need to live in their communities.
Hoosier Families of Medically Complex Children and their Supporters
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