Grace (l) with her sister (r) at Thanksgiving dinner..

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. As the budget process moves forward, here’s what’s at stake for Grace Dow:

I am a writer and disability advocate who has cerebral palsy. On my blog, I share personal stories as well as information about various disability rights issues. In the future I hope to become a published author. In my spare time, I enjoy reading, watching movies and following the Boston Red Sox and Pittsburgh Penguins.

I have Cerebral Palsy and I was born prematurely in India. I rely on a walker and a wheelchair for my mobility. Currently, I have private health insurance and Medicaid. Medicaid provides coverage for home and community-based services. Home and community-based services have allowed me to live in my own apartment since 2020. This was a dream come true for me. I am able to be an active member of my community because of Medicaid. I enjoy going to the movies, the grocery store, sports games, and traveling. None of this would be possible without Medicaid. Without Medicaid I would rely on my parents to provide all of the care I need or risk being forced into a long-term care facility.

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 you?

Grace bending down to touch a dolphin at an aquarium.

Medicaid cuts would be devastating to me. Without Medicaid, life as I know would be gone. I would lose my PCA (personal care assistant) services. Additionally, I would have to move back home with my parents. I would rely on them to provide all of the care I need or risk being forced into a long-term care facility.

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 have affected you when you were younger? And how will that affect children today?

IDEA allowed me to attend public school. I loved school and had wonderful teachers. I was fortunate to have a wonderful paraprofessional whom I worked with for a decade. Without IDEA, I wouldn’t have received the support I needed at school. I was able to go on field trips, and participate in all kinds of activities in the classroom.

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.

Aaron, wearing a college graduation cap and gown with a colorful sash, stands in front of the brick Beloit College sign. A college quad with trees is in the background.

Tell Congress people 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.

I just turned 23. I am a graduate of Beloit College, where I majored in Sociology and minored in Political Science. I plan to begin a Master's in Sociology this fall and hope to do research in the Sociology of Sports and inclusion of people with disabilities. 

I competed on the track and cross country teams for Beloit; this was after being a 3-sport 4-year athlete in high school (cross country, swim, and track). I was able to participate in all these sports and activities in part due to the provisions of the IDEA and also because I had a tremendous school athletic director and coaches. I plan to get my Master’s degree in hopes of making sure every child with disabilities is able to access extracurricular activities at their school and be part of their teams.

I had a diffuse and catastrophic birth brain injury, which resulted in my disabilities. I have received the diagnoses of cerebral palsy (tetraplegia) and epilepsy. I take expensive seizure medications to maintain my health; my family’s insurance helps me to afford them, but the landscape is continually changing in terms of generic vs. name brand medications and affordability. I also receive care from both a neurologist/epileptologist and a physiatrist, along with my basic medical care.

Aaron competing in cross country. He’s wearing a team running outfit and is crossing a small stream in a wooded area.

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 have affected you? How would it affect others today?

Because of IDEA, I was able to access both academic and extracurricular supports which allowed me to be successful and SAFE during the school years. I was able to receive support from a seizure-trained paraprofessional and to have coaching and participate on teams where all my medical accommodations were respected and honored. Cuts to the IDEA would really jeopardize the opportunities I had for young people today trying to receive an education and be part of their communities.

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.

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.

Tell Congress kids with disabilities shouldn’t be forced to pay the U.S. debt! 

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.