Save Medicaid & IDEA: Ethan & Christy Judd (Virginia)
Ethan speaking in a microphone at his church. He’s standing with the assistance of a gait trainer.
Tell Congress kids with disabilities shouldn’t be forced to pay the U.S. debt!
The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.
Ethan is 14 years old and will start high school next fall. He loves to sing at church and with his local community choir. He also participates in therapeutic horseback riding and is a member of his church youth group. This month, he will become a commissioned member of our church. Ethan also loves music and taught himself how to play ukulele during the lockdown. He dabbles with the guitar and piano.
Ethan volunteers with social programs within the community and knows that giving back is so important. He has worked with programs at our church to support the homeless community, and to feed and cloth refugees new to our community.
Ethan was born with congenital myasthenia syndrome, which affects the communication between his brain and muscles, leading him to have low muscle tone. He also had dislocated and subluxated hips, so he uses a wheelchair for long distance and for greater independence. In addition, his diaphragm had to be placated so that his lungs had room to develop. As a result of this, he has a tracheotomy and uses mechanical ventilation at night.
While we’re grateful the Biden Administration successfully protected Medicaid from being cut, it is already deeply underfunded. At least a million people are already on waiting lists for Home and Community-Based Services (HCBS), medical costs continue to rise, and care for our families could be compromised. How would that affect Ethan?
Through Medicaid, Ethan has weekly physical and occupational therapies to improve range of motion, which helps him to be more independent. He’s also able to see a variety of specialists at UVA Children’s Hospital because Medicaid picks up their co-pays. In addition, Medicaid pays for Ethan’s respiratory supplies, as well as his power wheelchair so he can be independent at school, engage with his peers, and participate in events like his 8th grade school dance and church youth services.
Without Medicaid, we would have to prioritize what parts of Ethan’s life are most important. Because of Medicaid, we can focus on Ethan’s whole self, not just the parts most in need of help.
Ethan’s monthly medical bills exceed what his father and I make as a teacher and social worker. Without Medicaid, our family would quickly become homeless because we would be paying thousands of dollars a month for things our private insurance doesn’t cover. We would have to choose shelter and food for all of us, or health care for my son. He might end up in the care of the state because we would be unable to meet his medical needs. Our lives would be shattered. Ethan is my heart, and he is loved by so many within his church community who have been inspired by his will and determination.
Ethan riding a horse during equestrian therapy—he’s accompanied by three aides, who are leading the horse around an outdoor paddock with a clapboard fence in the background.
Medicaid has helped Ethan live his best life, and now it’s his job to help others live a better life. With his small contributions, he is doing similar good for others.
The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that affect Ethan?
Ethan has an Individualized Education Plan (IEP) that enables him to receive services like a scribe for long writing assignments and breaks due to the fatigue he deals with as a result of his muscles. Additionally, the school provides transportation on a school bus with a wheelchair lift, so he can have his power chair at school to be independent.
Medicaid pays for a private duty nurse so Ethan can attend school. Without access to private duty nursing, my son would lose his ability to attend school, and either my husband or I would have to leave our jobs as a social worker and teacher. Ethan would not receive the education that he will need to take his place in society.
Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year.
Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.