When our son Noah was born at 36 weeks, we didn’t know our lives would become a 24-hour medical shift. After a severe newborn central nervous system infection, Noah was diagnosed with spastic quadriplegic cerebral palsy, refractory epilepsy, cortical visual impairment, and multiple other permanent conditions. He is nonverbal. He cannot walk. He is fed through a gastrostomy tube. He cannot perform any activity of daily living on his own. He takes numerous medications every single day some two, three, and four times daily. He has a Vagus Nerve Stimulator implanted to help control seizures that medications alone could not stop. We keep emergency seizure medication within reach at all times. He requires a cough assist machine and a compression vest just to help clear his lungs. He attends therapy at least four times per week. We travel up to three hours one way to see specialists who manage his care. This is not temporary. His disabilities are permanent. Children like Noah often have shortened life expectancies because of respiratory complications, uncontrolled seizures, and severe neurological impairment. Every illness carries greater risk. Every day requires vigilance. Because of his needs, I lost a good job. Like many families caring for medically fragile children and sometimes have to live paycheck to paycheck. Here is the impossible part: Under current Supplemental Security Income (SSI) rules, if I earn above a modest threshold, we risk losing the Medicaid coverage that pays for his seizure medications, feeding supplies, respiratory equipment, and therapy. Work more and risk losing the healthcare that keeps your child alive. Work less and stay trapped in poverty. This affects families nationwide. Over 1.3 million children receive SSI due to disability. Families caring for medically complex children lose on average more than $18,000 per year in earnings because of caregiving demands. This system unintentionally discourages work and keeps families financially unstable even when the child’s disability is permanent and medically verified. We are calling for targeted reform: Eliminate parental income deeming for children with medically documented permanent disabilities while keeping safeguards in place for temporary or improving conditions. This reform would: • Allow parents to work without risking life-sustaining benefits • Increase workforce participation and tax contributions • Provide stability for medically fragile children • Maintain program integrity through strict medical verification This is not about expanding eligibility. It is about correcting a structural flaw that harms families caring for permanently disabled children. No family should have to choose between earning a living and protecting their child’s life. Sign this petition to urge lawmakers to reform SSI parental deeming for permanent disabilities.