Save Medicaid & IDEA: Meghann & Miles Luczkowski (Pennsylvania)
Image Description: Miles, is seated in an adapted chair in his school classroom, holds a hand-drawn poster of an alligator with the title, “See You Later Alligator!", which is signed by various persons at the school. There’s a bulletin board and balloons behind him. Miles is smiling and he wears eyeglasses.
In exchange for raising the debt ceiling, Republican leaders are demanding extreme cuts to essential programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.
Miles is finishing up 2nd grade. He loves music, especially theme songs! If there’s a device nearby with access to the internet, Miles will find his favorite videos on YouTube before you can say “hey … where did my phone go?” Miles can’t speak by mouth yet, but says a whole lot with just his eyebrows. He is also learning to use a “talker” (AAC device) to communicate even more. He has two brothers he loves very much, and no one can make him laugh like his Daddy. Miles loves cuddling with his Mom and getting her to sing along to his favorite songs.
Miles has a rare skeletal dysplasia that comes with a lot of complex medical issues. Up until last year, he needed a breathing tube and ventilator. He still gets all his food and drink through his feeding tube. His complex GI issues cause chronic belly distention that requires a lot of hands-on skilled care throughout the day, so Miles can keep moving! He doesn’t stand or walk independently yet, but is learning how!
The Congressional Budget Office (CBO) estimated the Republican debt ceiling bill would cut Federal Medicaid funds by kicking 1.5 million people off their health coverage annually. It would also increase the amount states pay for Medicaid by $6.5 billion per year. Experts predict that many states would end Medicaid coverage as a result. How would that affect Miles?
Miles is able to live safely at home with his family and attend a public school with his friends and brothers thanks to Medicaid. We have “good health insurance” from our employers, but it does not cover even half the things Miles needs. His life in the community is possible because Medicaid gives him access to the specialized doctors, medical equipment, and services he needs to not just live, but thrive.
Medicaid provides private duty nursing to make sure he has hands-on skilled care to attend school and be cared for while we are working and handling other life responsibilities, or just being Mom and Dad to all three of our kids. Our employer-based insurance does not cover this service. The (covered) alternative is Miles living in a skilled-nursing facility away from his home and family, and not receiving the nurturing care he deserves to live his life the way he should.
Medicaid has given Miles access to the Skeletal Dysplasia Clinic at an out-of-state hospital whose doctors have guided his unique, complex medical care since before he was born. Their expertise not only saved Miles’ life on multiple occasions, it also increased his quality of life. Without Medicaid, our silly, strong, incredible Mr. Miles would not have access to the care and services he needs–the care that has allowed him to become the dynamic little boy he is and will allow him to develop into whoever he is meant to be.
The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Despite the fact that the Federal government pays only 16% of IDEA costs, Republicans want to cut an additional $31 billion over the next decade. This year alone, our kids would lose $3.1 billion, equivalent to firing 48,000 special education teachers and inclusion personnel, affecting 7.5 million students with disabilities. How would that affect Miles?
Image description: A close-up of Miles in his family’s home. He’s smiling and he’s definitely “talking” with those eyebrows!
Miles goes to the same school as his brothers. He is very popular and has taught a lot of other kids–and educators–about the importance of accessibility and inclusion. Miles’ access to school is dependent on robust funding to allow his teachers and administrators to create an environment that Miles can access meaningfully! His teachers have specialized training and use endless tools and resources to adjust to the unique ways Miles can do things.
Without specialized seating, adaptive equipment, walkers, physical therapy, occupational therapy, his AAC device (talker!) and speech therapy services, Miles would not be included in a mainstream school with his peers. His learning and his physical, social, and emotional development would all suffer without services provided through IDEA.
Republicans claim they need to cut these programs to cover the U.S. deficit, but that’s just not true. As House Republicans voted to cut our kids’ health care and education, they also introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year.
It seems like Congressional Republicans want our kids with disabilities to cover the U.S. debt to pay for the cost of their tax cuts to the ultra rich. We can’t let them get away with that.