Hey friends,
Some of you have asked how the new legislation in Congress might affect me and Abby. The truth? I’m scared.
Abby has Missouri HealthNet for the disabled. She also has a waiver that helps pay for things insurance doesn’t cover—like home modifications, vital supplies, and her caregivers (including me). We don't get food stamps. We don’t want a handout. We want to survive.
And right now, the programs that keep Abby alive and at home are on the chopping block.
I’ve been writing to every politician who still pretends to care. I’m asking them not to forget kids like Abby. To not throw our families under the bus for political gain. I’m including a fill-in-the-blank letter here that anyone can send to their own state or federal reps.
Because if we don’t speak up, who will?
And let’s be real—this didn’t start yesterday. In the state of Missouri, you can’t be paid to care for your own child until they turn 18. That means for 18 years, I worked around the clock as a full-time medical caregiver without an income. We scraped by, paycheck to paycheck, with no room to save or invest in the future. We didn’t go on vacations. We didn’t build a nest egg. We just survived—and sometimes, barely.
If this waiver is taken away from us, Abby’s needs will not suddenly disappear. I can’t just go out and get a job. I will still have to take care of her, 24 hours a day, 7 days a week. What we would lose is our income and her right to be cared for at home by someone who loves her. That’s what’s at stake here—dignity, safety, and a basic quality of life.
If you want to help, start by reaching out to your own representatives. You can find your U.S. Senators and House members at https://www.congress.gov/members, and your Missouri state legislators at https://house.mo.gov and https://senate.mo.gov.
Terri=Whackamama
Below you can find copy and paste letters to email your own representatives.
If you need help, please don't hesitate to reach out
FILL-IN-THE-BLANK ADVOCACY LETTER TEMPLATE (FEDERAL)
[Your Name]
[Your Street Address]
[City, State ZIP Code]
[Email Address]
[Phone Number]
[Date]
The Honorable [Representative/Senator Full Name]
[Office Address]
[City, State ZIP Code]
Dear [Representative/Senator Last Name],
I am writing to you as a resident of [Your City/County], State, and a parent of a child with complex medical and developmental needs. My daughter, [Child's Name], is [age] years old and has [Diagnosis or Disability]. She is [brief summary of condition: e.g., nonverbal, G-tube fed, non-ambulatory], and her care is dependent on the resources made available through {Your States Medicaid} and waiver programs.
I am deeply concerned about the impact of [name of bill or policy change, e.g., the proposed Medicaid reforms in the "Big Beautiful Bill"] on my daughter’s access to life-sustaining care and our family’s stability. [Briefly explain the impact: e.g., Home modification funds, caregiver pay, vital supplies not covered by standard Medicaid, etc.]
We are not asking for special treatment—we are asking to survive. When states or Congress chip away at safety nets for the most vulnerable, it is families like mine who are left scrambling. We want to work, to contribute, to care for our loved ones in our homes and communities—not in institutions.
Please protect [program/benefit], oppose [specific threat or provision], and support [alternative solution or legislation, if applicable]. Your advocacy matters to thousands of families like mine across [Your State}.
Thank you for your time and service.
Sincerely,
[Your Name]
[Optional: Parent and full-time caregiver to [Child's Name]]
FILL-IN-THE-BLANK ADVOCACY LETTER TEMPLATE (STATE)
[Your Name]
[Your Street Address]
[City, State ZIP Code]
[Email Address]
[Phone Number]
[Date]
The Honorable [Representative/Senator Full Name]
[Office Address]
[City, State ZIP Code]
Dear [Representative/Senator Last Name],
My name is [Your Name] and I live in [City/County], [State]. I am the parent and caregiver of my [age]-year-old daughter, [Child's Name], who has [Diagnosis]. She requires 24/7 care and support for all daily living activities. She is G-tube fed, non-ambulatory, and nonverbal.
We rely heavily on [State] Medicaid waiver programs, including [name of waiver if known], which help pay for medically necessary supplies, equipment, and caregiver support—including the ability for me to be a paid caregiver. Without these supports, my daughter’s health and safety would be at risk.
I’m extremely worried about [describe threat, proposed change, delay in funding, or policy issue]. [Explain personal impact briefly—cut services, waiting list delays, etc.]
I urge you to protect and fully fund these critical supports. Our family and many others across Missouri are watching and depending on your leadership.
Please don’t leave medically fragile children behind.
Sincerely,
[Your Name]
[Optional: Parent/Caregiver to [Child’s Name]]
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