Feeling powerless. That’s the emotion that washes over me as I observe my 3 ½-year-old son, Leo, who has Down syndrome, refusing to speak to his speech therapist. His stubbornness is palpable, and progress seems to be at a standstill. While his peers attempt to communicate with him, his responses are often unintelligible, leaving me hopeful yet anxious. I know he’ll find his voice in his own time, but the uncertainty looms large.
Leo isn’t aware of the clock ticking down in the background. He doesn’t grasp the urgency. How long do we have to secure the support he needs? His outpatient therapists are our biggest advocates, but they could be taken away from us at any moment.
How is that possible? Through Medicaid—a topic that sparks heated debate. This post isn’t intended to stir political divisions; rather, it’s a heartfelt account of why this government program is vital for our family and countless others. If you’re like I once was, you might not fully understand its significance.
When Leo was born, a nurse reassured me, “You won’t have to stress about the staggering costs of raising a child with a disability—all the therapies and medical equipment. Pennsylvania is one of the best states for services.” In the haze of Leo’s diagnosis, I didn’t yet comprehend the weight of that statement.
Pennsylvania stands out as one of the few states offering Medicaid to families with children who have disabilities, regardless of their income. You might think this is an unfair advantage. If we earn a decent living, shouldn’t we cover our child’s expenses? What many don’t realize is that Leo’s primary insurance only allows for 20 therapy sessions each year, which is standard for most insurers. With Leo needing seven therapies weekly, we would deplete our coverage in just three weeks. After that, we’d be faced with out-of-pocket expenses.
How much would that be? A staggering $3,400 per week—around $163,000 annually. I have the statements to back it up. A friend once told me, “So what? You can manage it. Just sell your boat.” If only it were that straightforward! I’d gladly part with the boat. And I’m not even addressing the numerous doctor visits and medical supplies like his adaptive stroller and nebulizer. Compared to others in the differently-abled community, Leo’s needs are relatively minimal.
Recently, a fellow parent and I spoke with a government official during a conference call about potential Medicaid cuts and their impact on families like ours. He confirmed that the risk of losing vital services is very real. Medicaid is funded by both state and federal sources. For every dollar a state invests in Medicaid, it receives an equivalent amount from the federal government—without any cap.
However, the current administration is considering a shift to a block grant system, which would impose limits on funding. In simpler terms, it would cap expenditures, meaning states wouldn’t be required to match federal contributions. Given that Pennsylvania already allocates a significant amount, there wouldn’t be enough to fill the gap left by the federal government. Families like mine would be among the first to feel the pinch. Our decent income and lack of complex medical needs could put us at risk of losing essential therapies. I would then be left to choose between whether Leo should learn to use utensils or communicate with his friends. We wouldn’t be able to provide him with everything he requires, leading to long-term setbacks.
Research consistently shows the importance of early intervention. Childhood therapies correlate with positive outcomes in various areas, including cognitive development, behavior, and future academic success. Ensuring that children receive the support they need is beneficial for all of us. If I want Leo to thrive as an adult, these therapies are crucial.
Just last week, Leo experienced a breakthrough during a session with his speech therapist. After endless attempts to encourage him to express his preferences verbally, he finally spoke up. It felt magical! This progress is translating into his interactions at home, school, and other therapy sessions. He had begun to show troubling behaviors due to his inability to communicate his needs, but thanks to speech therapy—largely made possible by Medicaid—he’s managing those issues and fostering a sense of independence. He deserves to develop these skills in his own time, not on a government-imposed timeline.
If you want to make a difference, please share this message. Spread the word about the importance of Medicaid and contact your lawmakers to oppose the proposed changes. My family appreciates your support and attention to this issue.
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In summary, Medicaid is a lifeline for families like mine, providing essential services that enable our children to thrive. The proposed cuts could jeopardize the progress that children with disabilities, like my son, are making every day.
Keyphrase: Medicaid for families with disabilities
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