Our children bring immense beauty and value to the world, yet they are too often underestimated and hindered by policies that fail to recognize their potential. Whether you have had to battle for your child’s right to a free and fair education, a spot in daycare, behavior health services, medical equipment, therapies, or for meaningful inclusion in all aspects of life, you have lived experiences that can help legislators understand the impact of these decisions.
DEI is not a meaningless acronym, It protects our children from discrimination. It is all too common of a reality for us. People take for granted things like summer camps, daycare access, and inclusion in sports and extracurricular activities. People with disabilities face discrimination in the workplace and in many settings. Policies exist to fight those barriers. These are policies that were met with bipartisan support when they were introduced.
Medicaid isn’t a program that can just be cut on a spreadsheet for a tax break for the wealthy. Medicaid is Sienna’s therapies, her speech device, her walker, Safety Sleeper, her orthotics, her checkups and prescription medication. This life can make every day experiences more challenging. We have been so grateful that access to healthcare has not been one of those challenges.
Sienna’s education has been a constant uphill battle from the very first IEP meeting. She is in second grade and has been in 3 different schools already. She finally is at her neighborhood public school, and it faces closure due to funding issues that stem from charter schools and school voucher programs. The current administration wants to grow those programs, and simultaneously eliminate her rights which are currently protected on a federal level at the Department of Education.
This current administration is attacking the disability community. My rage has motivated me to action. If you are interested in joining a group of families interested in protecting our children, please reach out to me on social media or here. We will organize, educate, and take action to demand better policies that uplift and support individuals with disabilities. Through collaboration, shared lived experiences, and collective advocacy, we will hold policymakers accountable and push for meaningful change.
Yesterday, Donald Trump stood in front of the nation and blamed disabled people for a tragic plane crash. Instead of discussing the victims, their families, and how to prevent such tragedies in the future, advocates were forced to process yet another attack on our community. In just two weeks, I have had to defend my daughter’s worth more times than I care to count. She stands to lose her education, her access to medicaid, and now her dignity and rights as an adult. No mother should be forced to feel this way.
Sienna is a gift to this world. She is beautiful, smart, loving, feisty, and empathetic. She has much to contribute, and she experiences emotions on a depth that Trump will never comprehend. She may have an intellectual disability but she has more emotional intelligence than our current President. She feels my sorrow right now, just as she feels joy, love, and frustration with the same fierce intensity.
Yesterday, I talked to my therapist about my struggle with consuming information versus letting it consume me. When Biden was elected, I was finally able to turn off the fight-or-flight mode I had been living in. I redirected that energy toward my community, focusing on local politics and how they impact Sienna’s education and our neighborhood.
I live in a vibrant and diverse pocket of Pittsburgh. Every day, I see a melting pot of people—college students from all backgrounds, senior citizens, families with two moms or dads, and individuals with different abilities. This is the kind of community where I want my daughter to grow up. People often ask why we haven’t left the city for the suburbs and a “better” school district. What they don’t see is that when Sienna becomes an independent adult, this will be her home. Here, she will have access to public transportation, support services, inclusive employment opportunities, and a community that embraces her fully. This is the space where we want to live, surrounded by people whose hearts are full of acceptance.
Yes, our school district struggles with funding, but it also has one of the best transition programs in the state. Fierce advocates in the disability community ensure that students like Sienna are not forgotten.
Our family has endured crisis after crisis over the past four years. Grief has surrounded us, and we are still navigating its aftermath. But just as we started to find stability, we were reminded of the fears that come with Trump’s presence in power.
Trump’s latest remarks weren’t just another case of casual bullying. They were targeted, dehumanizing, and historically dangerous. By explicitly stating that disabled people should not exist in certain jobs, he reinforced the idea that disabled individuals are inherently incapable of participating in society. This is not just an attack on disabled people; it is a deliberate strategy of scapegoating and social conditioning.
We’ve seen this playbook before. Extremists don’t start with genocide. They start by convincing the public that certain groups are burdens—unworthy of existence, unfit to contribute, and ultimately, disposable. One of the first groups they target is always disabled people. The Nazi T4 program, which led to the mass murder of disabled individuals, was justified through the same rhetoric Trump is using now—that certain people lack intelligence, productivity, or value.
The goal is simple: Normalize dehumanization. Convince the public that some people are “defective” and should be excluded, and you can justify anything. This isn’t just history—it’s happening now.
This is a real-time strategy unfolding before our eyes. The linking of disabled people to incompetence and societal failure is how leaders manufacture public approval for discrimination, exclusion, and eventually, violence. And Trump is not alone in this. RFK Jr. has spread ableist and transphobic conspiracies, positioning disabled people and LGBTQIA+ individuals as “problems” to be contained or eradicated. Now, he has been given power over public health.
This is not an accident. It is a broadening of the scapegoat.
Privilege allows people to ignore injustice. I know because I did—until I became Sienna’s mom. Through this lens, I have learned so much about why leadership matters, why policies impact our most vulnerable citizens, and why fighting injustice is not optional. I have wept over systemic failures, and I have fought battles with all my strength. I will never stop fighting.
My aunt once told me that anger is a holy act when it is harnessed for change. I struggle with balancing that anger—how to use it without letting it consume me. I struggle with not blaming those who voted in ways that threaten my daughter’s future, but blame won’t change anything. Instead, we must act.
So What Can We Do?
Stay informed. Recognize when history is repeating itself. Amplify disabled voices. Support activists, filmmakers, and educators speaking out. Push back against dehumanization. Challenge harmful rhetoric whenever you hear it. Defend legal protections. Disability rights laws exist for a reason—don’t let them be eroded. Build coalitions. Marginalized communities must stand together because when one group is targeted, others follow. Follow groups like the ACLU.
We cannot afford to be silent. The cost is far too high.
Call and email Congress every week. Find your representatives at congress.gov. Tell them no cuts to Medicaid, education, or DEI programs. Demand that they vote against every unqualified cabinet pick—if they truly care about meritocracy as they claim to, they must act accordingly.
Powerless. That’s how I feel. I watch as she avoids saying one word to her speech therapist the entire session. She’s so stubborn. She isn’t making progress. Her peers try to communicate with her and her responses are unintelligible. I know it will come. It will come in her own time.
Sienna doesn’t see the giant clock counting down over her head. She doesn’t know it’s there. How much time do we have left? Her outpatient therapists are her biggest cheerleaders. Yet, they could be ripped away from us in the blink of an eye.
How? Medicaid. A controversial topic today. This post isn’t meant to be politically divisive. It’s meant to explain why this government program is so important to our family and families like ours. If you’re anything like I was before I entered this world, you might not know.
When Sienna was born, one of the nurses said to me, “You won’t have to worry about the overwhelming costs associated with raising a child with a disability – all the therapies and medical equipment. You live in one of the best states (Pennsylvania) in the country for services.” At the time, in the fog of Sienna’s diagnosis, I didn’t realize the significance of that conversation.
Pennsylvania is one of the few states that provide Medicaid to families raising a child with a disability, regardless of their income. You might think that’s unfair. If we have a decent income, we should pay for our child, right? What you might not know is Sienna’s primary insurance covers 20 therapy sessions per year. This is typical of most insurance companies. Sienna receives 8 therapies per week. We’d burn through what our insurance covers in 2 1/2 weeks. After that, we’d be paying out of pocket. How much? $3,400 per week or roughly $163,000 per year. I have the EOB statements to prove it. Someone in my life once said to me, “So what? You can afford it. Sell your boat.” If only it were that simple. I’d give up the boat in a heartbeat. I’m not even talking about the dozens of extra doctor visits and medical equipment like her walker, adaptive stroller, and orthotics. Sienna’s needs are minimal compared to other kids in the different abilities community.
Another Mom and I spoke with a government official a few weeks back over a conference call asking if the proposed Medicaid cuts could affect our families here in Pennsylvania. He informed us that the possibility of Sienna losing her access to these services is real. Medicaid operates with funding from states and the federal government. For each dollar a state spends on Medicaid, it receives a matching amount of federal funds—without limit—making Medicaid a statutory entitlement for states participating in the program. The Trump administration wants to convert Medicaid to a block grant system. The least complicated way to explain it is to say this….it would put caps on everything. They wouldn’t be obligated to match that funding, and because Pennsylvania spends so much, they don’t have any extra to cover the gap that would be left by the federal government. Families like mine would be first on the chopping block. We have a decent income and no complex medical needs. When and if this happens, we will be forced to cut therapies. I will have to decide if using a utensil to eat or talking to her peers is more important. We would never be able to provide her with everything she needs. She would suffer in the long run.
Study after study has shown the importance of early intervention. Childhood therapies are linked to positive outcomes in the following areas; cognition and academic achievement, behavioral and emotional competencies, educational progression and attainment, child maltreatment, health, delinquency and crime, social welfare program use, and labor market success. It benefits ALL of us to give children the proper supports they need to succeed.
Last week, Sienna and her speech therapist had a groundbreaking session. After months of presenting Sienna with options, asking her to verbally acknowledge her choice, she finally gave in and spoke her preference. Elsa or Elmo, Sienna? Elsa! It was magical. It’s crossed over at home, at school, in other therapies, and in her behavior. She was starting to develop some concerning behaviors because she couldn’t communicate her needs. Because of speech therapy, hell BECAUSE OF MEDICAID, she was able to mitigate those behavior issues. She has developed a sense of independence. She deserves that. She deserves to gain those skills in her own time, not the government’s time.
If you want to know how you can help, share. Share this blog piece. Call your lawmakers and tell them you do not support the proposed changes to Medicaid. If you want to get even more involved, reach out to me. I can help. Thanks for reading.
