10/09/2026
I’m currently going through another round of endless paperwork to prove Jude’s disability so he can continue receiving SSI. Another lifeline for our family, especially because his medical coverage and our overall livelihood are tied to these programs.
And I think what people fail to understand is that for many families raising children with disabilities, these programs are not supplemental income. They are how we survive. They are how we keep a roof over our children’s heads, access medical care, and provide the level of support our children need.
So when these programs are threatened, it’s terrifying. Because the stability you’ve worked so hard to create can feel like it’s one letter, one assessment, or one decision away from being taken from you.
Being a full-time caregiver IS A FULL-TIME JOB. The paperwork, the doctors’ appointments, the insurance companies, the constant advocacy. Having to explain your child’s disability over and over again to people who will never see what your life actually looks like outside of those forms.
And that’s what makes this so exhausting. I spend every single day caring for my son, only to sit down and fill out paperwork explaining why he still needs care.
Families raising children with disabilities should not have to live in constant fear of losing the resources that keep their families afloat. We should be able to focus on caring for our children without having to constantly fight for the stability of our homes.
Our children deserve support without us having to repeatedly prove they’re worthy of receiving it.