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.

Image Description: A close-up of Thomas waving a bubble wand and surrounded by large iridescent bubbles.

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

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.

Thomas is sixteen. He’s a happy guy who loves Star Wars, pop music and root beer. He has a hello and goodbye for everyone and everything - “So long Target!” He loves movies and has Star Wars and Toy Story mostly memorized. He loves to go places in the car and order milkshakes in the drive thru, especially the magical McDonald’s. He is going through a book phase currently (even though he doesn’t read yet) and loves to carry a stack of books with his Darth Vader action figure sandwiched in the middle. Thomas cannot see the bad in anybody and can make the grumpiest person smile. We are so lucky to have him! He is an asset to the planet. 

Thomas was diagnosed with Tuberous Sclerosis Complex (TSC) when he was three months old and began having seizures. TSC causes benign tumors to form in the tissues of the body, primarily the brain. TSC affects everyone differently and Thomas is deeply affected, with tumors all over his brain. The tumors even interfered with the development of his left eye in utero, and he is blind in that eye. Thomas has had many hospitalizations for seizures and has had two rounds of brain surgery and several surgeries on his kidneys and ankle. 

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 Thomas?

Medicaid pays for what our insurance does not. Thomas’ many hospitalizations, his very expensive anti-seizure meds, and the cost of his health care aides would have bankrupted us many times over without it.

Thomas would be isolated at home without his Medicaid-paid aide to take him out in the community: to the park and the library. I wouldn’t be able to run my small business because I would need to care for him full time. His sister would have far less attention from us and less freedom. We would be financially devastated by the costs of his medications alone.

Image description: Thomas, smiling and wearing a navy hoodie, poses under the branches of a tree covered in pink blossoms.

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 Thomas?

Thomas goes to public school for children with disabilities. He receives life-changing therapies and instruction, including occupational, physical and vision therapy; orientation and mobility training; and group and family therapy. The school also provides social experiences: plays, proms, dances, and vocational training. Thomas has grown so much because he’s able to attend a school that meets his needs. He would not have thrived without it.  

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.

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.

A boy wearing sunglasses holds a colorful spoon as he rolls an Easter egg down his lane on the White House lawn.

On Monday, April 10, some of our Little Lobbyists families were invited to attend the first-ever disability-friendly Easter Egg Roll! We are grateful to the White House, First Lady Dr. Jill Biden, and the White House Office of Public Engagement, especially Senior Advisor Anna Perng (a fellow member of the disability community), for all of the hard work that made this day possible.

In the past, large crowds, loud noises, inaccessible terrain, and few accommodations or adaptive activities made the annual White House Easter Egg Roll – an event that dates back to 1878 – challenging for our families to participate in or fully enjoy. This year First Lady Dr. Jill Biden, whose office plans and hosts the event, wanted to do more to prioritize inclusion, so the White House reached out to partners in the disability community and asked us to share our experiences and suggestions. Little Lobbyists was thrilled for the opportunity to work with the White House Office of Public Engagement to help ensure the success of this first-ever event – inclusion is central to our mission and we love to see our kids have FUN! 

This year, many steps were taken to help kids with disabilities (and their families!) participate in the White House Easter Egg Roll. They included:

• A sensory-friendly session: Each year, the White House welcomes over 30,000 people to the Easter Egg Roll! It is VERY crowded, loud, and busy – which can be too overwhelming for many of our kids. To address this, the White House created a new, earlier session (from 7-9 am) for a smaller number of participants given tickets through a variety of disability-related organizations. Louder musical events were also postponed until later in the day.

• More accessible grounds: The Easter Egg Roll takes place outdoors on the lawn of the White House. It’s a pretty spectacular back yard, but the uneven terrain can be difficult for people with mobility challenges. To make it easier, wheelchair and walker-friendly pathways were put in place throughout the grounds. There were also more accessible bathrooms, including family bathrooms, and places for changing larger kids and adults as needed. 

• Adaptive equipment and activities: There were beeping eggs for those who are blind/low vision, hockey sticks and grab-arm devices to help those with mobility needs reach the eggs, spinning lego robot egg decorators (so cool!), and more.

• Volunteers and helpers: The army of volunteers is always amazing, but this year there were additional volunteers trained to help people with disabilities – including students from the nearby George Washington University studying to become Occupational, Physical, and Speech Language Therapists. Disability-support volunteers wore buttons to help families identify who they could ask for help and accommodations.

Our kids rolled and hunted eggs, met their favorite cartoon characters, posed for photos, participated in physical education activities, STEM projects, and and arts-and-crafted to their hearts’ content! We all left with smiles on our faces and our hearts full. We were excited to see many of the things our families suggested put in place, and the White House has already asked us to provide additional feedback on how they can make the event even better next year.

When the First Lady and President Biden greeted the assembled egg-rollers later in the morning, the President proclaimed “Welcome to the White House —YOUR house!”

Little Lobbyists know that kids with disabilities BELONG in their communities. We are grateful our President, First Lady, and White House understand this, too.

We hope you enjoy the slideshow below sharing all the fun we had! We encourage the White House to continue building on their efforts to be inclusive, and we encourage everyone everywhere to bring people with disabilities and their families to the table to make their own backyards, communities, and events more inclusive. Just look how much fun it can be! 

Hover your cursor over the photos to read the image descriptions in the captions!

Posing with the Easter Bunny

A family poses with the Easter Bunny with the White House in the background

Rolling Easter Eggs

A boy crouches down to roll an egg using a colorful spoon

Easter Egg Champion

A boy & his mom pose in front of the White House—the boy holds up a colorful spoon used to roll the egg

White House Seal

Three children pose in front of huge Easter graphics

Hello Minions!

A boy and a large yellow Minion characters go eye-to-eye

Tossing the Football

A boy cocks his arm to throw a football on a large playing field

White House Photo

A boy and his mom pose in front of the White House, which is decorated with colorful Easter banners

Meet the Minions

A boy and his dad pose with two of the big yellow cartoon characters in front of a tent—the boy is a wheelchair user

Hang Out with Astronauts

A mom poses with a NASA employee—she is behind a big astronaut cut-out which shows her face where the helmet is—her daughter, a wheelchair user, poses beside her.

Beeping Eggs

A girl in a sun hat holds up an Easter Egg designed to beep for those who are blind/low vision

Meet the Cartoon Characters

A family poses with several cartoon characters

White House Selfie

A mom and her daughter take a selfie in front of the White House

True Grit

A mom poses with the Philadelphia Flyers mascot, Gritty

Having Fun

Three children pose in front of the White House

Official Egg Portrait

A family poses next to large, colorful Easter graphics cut-outs—the White House is in the far background

Rolling rolling rolling

Children roll Easter eggs down lanes marked out on the White House lawn

Only You Can Prevent Forest Fires

A family poses with Smokey the Bear

Family Portrait

A family poses in front of a white picket fence with the White House in the background

Egg Decorating

Two girls in bright jackets put stickers and draw on colorful eggs at a table

Gritty for the Win

A boy poses in front of a white picket fence. The NHL mascot Gritty leans over the fence behind him.

Super Certification

Two girls, one who uses a wheelchair, pose with their activity completion certificates

Peanuts Forever

A child poses with the characters Charlie Brown and Snoopy

Robotic Eggs

A girl holds a marker as an automatic egg twirler spins an egg, making decorative lines

Super Heroes

A family, including a son who uses a wheelchair, poses with Superman and Wonder Woman beneath a large tree

Collecting a Prize

A girl who uses a wheelchair collects her prizes from the Easter Egg hunt

Super Snoopy

A mom poses between cartoon characters Snoopy and Charlie Brown

Waiting for Go Time

Four children pose on a street corner outside the White House, waiting to be let into the event.

Peanuts Forever

A family poses with Snoopy and Charlie Brown

Meet Tigger

A young man meets Tigger and Winnie-the-Pooh. You’re never too old

Easter Egg Hunt

A young man shows the Easter eggs he’s found in his blue bucket. The White House is in the background

Family Day

A family poses with the White House in the background

Easter Egg for the Win

A boy carries an egg on a colorful spoon as he moves down a cordoned aisle on the White House lawn

Never Enough Snoopy

Another family poses with Snoopy and Charlie Brown

Egg & Roll

A girl seated in a wheelchair uses an adaptive stick to roll her egg

The Early AM Crowd

A group of Little Lobbyists families poses on a street corner before the event—the Washington Monument is in the background

On Our Way

A group of families poses on the accessible pathways laid across the ground of the Ellipse as they enter the event

The Bidens and Friends

Flanked by two large Easter rabbits, President and Dr. Jill Biden wave from a balcony decorated with flowers and the White House seal

Fountains of Fun

A mom and her son, who uses a walker, pose in front of a fountain encircled by tulips. The White House is in the background.

Snoopy Rocks

A mom poses between Snoopy and Charlie Brown

Ready, Set, Roll!

A group of children, some with adaptive equipment, wait to roll eggs down their lanes on the White House lawn

Family Portrait

A family poses in front of the decorative picket fencing the White House used to separate events

Grab Them While You Can

A boy wearing a fedora and using an adaptive walker holds a mechanical arm grabber while his mom points to eggs he can pick up to put in his bucket

We Count, Too

A girl who uses a wheelchair marks her participation in the event while her dad points to the big chart

Arts & Crafts

Two girls work on making seed necklaces at a table under a tent

Egg Decorating

A young man and his mom work together to decorate an egg using the twirling decorating machine.

Rob Stone of Little Lobbyists (r) poses with Judy Heumann (l) at her book signing in March 2020. [image description: Judy wears a colorful print shirt and smiles, seeming to share a secret with Rob, who also smiles. Huge bookshelves are behind them.]

This week, the disability community lost a great light. Judy Heumann has been called the mother of the disability rights movement, and her life reflected that. She was kind, warm, encouraging to Little Lobbyists families, and, especially to our children. 

Her own family, as described in her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, encouraged her to understand that she had the same rights as anyone else–just as we at Little Lobbyists now tell our own children. Disabled people have a right to an education, a job, a home, and the supports to live independently. We have the right to be included. 

Judy did all of this with both righteous anger and joy. Jim LeBrecht’s film Crip Camp: A Disability Revolution shows a young Judy at camp in the Catskills, igniting a fervor for independence and inclusion among her fellow campers who would go on to be leaders of the disability rights movement. We want our children to be like that–always demanding more. We want our children to be inspired by her book for young people, Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution. 

Judy said to reporter Joe Shapiro, "Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I'm living in a wheelchair." That changed how Shapiro saw disability. We couldn’t agree more. 

Elena Hung (r), co-founder and executive director of Little Lobbyists, poses with her daughter Xiomara (c) and Judy Heumann (l) at Center for American Progress event, pre-pandemic. {image description: Judy is seated in her wheelchair, and Elena sits on the floor holding Xiomara. In the background are a set of empty chairs on a dais, as if an event has just taken place.]

Growing up in the 1950s and ‘60s, Judy faced a world far different than the world our children live in today. It is because of Judy and other disability advocates that our children are included in their communities now. She fought to go to school, fought to become a teacher, fought to live independently. She and her friends fought to implement Section 504, which “forbids organizations and employers from excluding or denying individuals with disabilities an equal opportunity to receive program benefits and services.” It was the first piece of civil rights legislation for people with disabilities, and led directly to the passage of the Americans with Disabilities Act (ADA). 

Our disabled and medically complex children can live in their communities, where they belong, survive and thrive, because of Judy Heumann. We will not forget. We will continue the work. We’ll tell our children about Judy, so they can tell their children. 

Thank you, Judy. We love you.

Rob Stone getting on the school bus in the early 2000s [image description: a very young boy is seated in his wheelchair being lifted into the back of his school bus on a mechanical lift. He wears a hooded jacket and is smiling.]

I can still remember our family’s first encounter with disaster preparedness–or lack thereof–it was the day of 9/11, 2001, and my son Rob was four years old. My husband and I had waved him off to preschool on that beautiful, bright blue morning at our home in the Washington, DC suburbs. An hour later, disaster struck. My medically complex and disabled child was miles away and I didn’t know what to do.

Phone lines were jammed; all the main routes in the DC area were clogged with traffic. I was frantic–unable to figure out whether Rob was safe, or when he might come home, or how I could even get to him. I was also waiting on a plane that would deliver a medication solvent Rob needed–I didn’t know if it had been diverted. Without that solvent, his acid reflux would spiral out of control. While the 9/11 attacks, in the end, were limited to some very specific targets, at the time, no one in the DC metro area knew whether this would be a continuous and sustained assault–communications, the power grid, access to pharmacies and hospitals were all a big question mark.

Two decades later, we’re all inhabiting a world that’s vulnerable to the effects of climate change, and our power grids are increasingly subject to failure. In recent years, social and political tensions in the U.S. have led to violence and unrest in our communities, including attacks on the power grid, and attacks–real or threatened–on state houses and the U.S. Capitol. 

While our families are accustomed to contingency planning on an everyday basis, who will look out for us when something major strikes? The scary truth is, no one looks out for disabled people when disasters like 9/11, natural or man-made, strike. 

In recent months, California, New York, and North Carolina have all been affected by storms and prolonged power outages. As Alice Wong says:

“Whether they are caused by wildfires, earthquakes, hurricanes, flooding or storms, power outages are a life-and-death issue for many of us. Time and time again, disabled and older people are left behind or not prioritized in emergency planning.”

The Partnership for Inclusive Disaster Strategies is trying to ensure that governments have disaster planning in place for people with disabilities: “[We are] the only U.S. disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies.” Tip: Bookmark their website on your phone–there are great resources.

Currently, Medicaid rules in most states cut us off from two of the lifelines we need to survive under emergency circumstances: Access to home generators and backup supplies of medication. 

In 2001, it was easier to “get ahead” on medications, and I was able to squirrel away at least a week’s worth to put in Rob’s go bag. However, insurers have been tightening up on prescriptions, and now we can only stay a few days ahead. A California family experienced this horrible situation during recent flooding. Federal and state Medicaid rules need to be changed to provide a modicum of support for disabled persons during these increasingly common disasters.

I’ve learned to be as prepared as I can, although I worry it isn’t enough. In addition to go-bags, while planning for a summer vacation, I found that I could buy back-of-seat storage units for our van, which can hold essential supplies at the ready on a regular basis. I also keep the car chargers for Rob’s equipment in the glove compartment at all times. We have day and night medication and treatment schedules on paper and on our phones. 

You all know the drill. So let’s talk tips and tricks: How do you stay prepared? What’s your advice?

---

Jeneva Stone is the Little Lobbyists blog manager.

Emma Staggs at home during the holidays. {image description: A young girl with a pretty updo of braids sits on a couch working with her communication device. She has a tracheostomy. In the background are stairs and decorative columns, and a brightly lit holiday wreath.]

Families like ours are nothing if not prepared. As a mom and caregiver to my Little Lobbyists, Emma and Sara Bean, I have plans on top of plans. Emergency Action Plans (EAPs) are a lifesaving requirement for our homes and our schools. Our families have checklists, “go bags” and contingencies. When systems fail, we are the last line of defense between our loved ones and calamity.

I live in North Carolina, where recent, unannounced rolling blackouts by Duke Energy in addition to unplanned outages over the Christmas holiday resulted in panic and scrambling. In the early morning hours of December 24, 2022, systems failed. Redundancies failed. Tens of millions of us were without power for hours on end. As temperatures dropped indoors due to the polar vortex that covered a majority of the country, those of us with in-home medical equipment that directly saves or sustains the lives of our loved ones burned through their batteries or watched those batteries dwindle. 

Because of our readiness plans, we can leave the house with all necessary equipment and supplies in a matter of minutes.  We were already making calls to local family and friends, as well as area hotels to check availability (and whether they had power).

In North Carolina (and across the nation), thousands of residents rely on durable medical equipment (DME) such as ventilators, feeding pumps, suction machines, oxygen concentrators, apnea monitors, and more. As we’ve learned from the pandemic, keeping medically complex people at home saves lives, and it also reduces the strain on hospital systems.

Emma relies on a host of medical equipment including a pulse oximeter, a cool mist machine for her tracheostomy, nebulizer, oxygen concentrator and a feeding pump. We were lucky. We were fortunate. Our home’s power was only interrupted for 2 hours. As I began checking in with friends (we all have our online medical community, right?) I heard story after story about dire circumstances.

A friend whose son lives on a ventilator scraped together $1,300 out of pocket for a home generator, but was still alone in the dark and cold for 12 hours.

Another friend had to pull together $500 for a hotel (thankfully, one was available) to move herself and her child into, so his total parenteral nutrition (TPN) wouldn’t freeze.

Yet another friend had to dial 911 and get ambulance transport to a hospital (thankfully, one was available) because the battery on her oxygen concentrator was near empty after 12 hours.

When I hear the common refrain of victim blaming–“You should’ve had a plan!”--my reaction is not anger or indignity. I’m kinda glad for people who don’t know about this facet of life. They haven’t experienced the extraordinary efforts to get (DME) approved and maintained, a process that can take the better part of a year. They weren’t made to turn in “back up” ventilators in recent years, or find those supplies under recall. 

Due to the pandemic and the effects of long Covid, thousands of Americans have acquired disabilities that require home DME, meaning that power outages are affecting more and more people. Many don’t know that Medicaid and state Medicaid waivers will not allow the purchase of even the simplest and smallest home generators for medical equipment. While most DME comes with back-up batteries, most of these back-ups are good for only a few hours. Additional backup batteries are difficult to acquire, and many DME manufacturers do not make them. 

We are doing our best to keep our loved ones safe at home, doing our best to reduce strain on our increasingly over-taxed hospitals, and doing our best just to survive during these long pandemic winters. Unplanned, unannounced rolling blackouts in addition to power outages are simply inexcusable because most power companies don’t have plans for those on home medical equipment. In short, Duke Energy simply doesn’t know how many in-home ventilators it effectively turned off when it enacted contingency efforts.

For now, I’m working on holding our regional power utility to account for the layers of failures that occurred. Last Tuesday, Duke Energy was called to a public hearing with state regulators, and began its remarks with an apology to its customers.

Respectfully, we’re looking for changed behavior and more robust processes.

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Stacy Staggs is the Director of Community Engagement at Little Lobbyists.

Photo Credit: Official White House photo by Pete Souza. [image description: Lois Curtis (center) presents President Barak Obama (r) with one of her paintings. To the left of Lois is her direct support professional. They are in the Oval Office.]

On June 22, 1999, when the U.S. Supreme Court issued its landmark disability rights decision in the case of Olmstead vs. L.C. & E.W., my family was at the beginning of our own disability rights journey. My son Rob had just turned two, and we were struggling with “all the things”: health insurance, durable medical equipment, impending surgery, and, most importantly, how to keep Rob in his community. 

Had Rob been born 15 years earlier, he would have been automatically institutionalized. Rob and my family owe a huge debt of gratitude to Lois Curtis, the “L.C.” in the Olmstead case. 

Lois Curtis, a disabled activist and artist, passed away on November 3, 2022, at the age of 55. It was Lois who was the driving force behind the Olmstead litigation. Ironically, the case is perpetually referred to by the name of the Georgia Commissioner, Tommy Olmstead, who opposed community living rights for disabled people, a reference that threatens to erase Lois Curtis from our collective memories.

Lois and Elaine Wilson (“E.W.”) were both subjected to the horrors of institutionalization. Both women were locked in state facilities due to their developmental and mental health disabilities. Lois was determined to get out. Angela Weddle, a disabled artist who has been featured on our blog, reports that Lois said of her unjust isolation and segregation, “I prayed to God. I cried at night so I prayed to God every night in my bed.”

Disabled people have been fighting for their community living rights throughout U.S. history, for the right to stay out of institutions and “asylums.” Medicaid itself did not allow in-home care until 1983 when Katie Beckett’s situation caused Congress to finally establish the first Home and Community-Based Services (HCBS) waiver. The Americans with Disabilities Act (ADA) of 1990 established community living rights, but these were difficult to enforce until Lois Curtis sued the State of Georgia for her freedom to live where she chose, and to compel the State of Georgia to provide her with appropriate HCBS supports.

Lois repeatedly contacted the Atlanta Legal Aid Society to ask for their help, and in 1995, it agreed to take her case, which took four years of effort to reach the Supreme Court. In 1999, the Supreme Court sided with Lois, a decision which put more muscle behind the ADA and the imperative to provide HCBS. The Court said that “people with disabilities like Lois and Elaine have the right to receive the treatment they need[ed] in an integrated setting if that is what they want, if their doctors agree, and if it doesn’t fundamentally change how the state provides services to people with disabilities.”

According to all accounts of her life, Lois Curtis thrived outside of the institutions that had once oppressed her. Lois Curtis was a trailblazer in many ways. Angela Weddle discusses Lois’ passion for art, and her talent for portraiture. You can see some of Lois’ art here. Sara Luterman reports on what Lois’ legacy means for disabled people of color, especially Black disabled women. Luterman also notes the intra-disability bias against those with intellectual and/or mental health disabilities, quoting activist Finn Gardiner, “There’s a divide in the disability community between people with physical disabilities and people with disabilities that affect their cognition or their mental health.” Lois Curtis secured rights for all disabled people, not just some. 

In his tribute to Lois Curtis, disability activist Mike Erwin writes, “Curtis was asked what her wish was for all the people her determined action has helped move out of institutions. ‘I hope they live long lives and have their own place,’ she said. ‘I hope they make money. I hope they learn every day. I hope they meet new people, celebrate their birthdays, write letters, clean up, go to friends’ houses and drink coffee. I hope they have a good breakfast every day, call people on the phone, feel safe.’”

My son Rob, who has developmental disabilities, is now 25. When Rob transitioned from high school, he decided his life goals were to be an artist and an advocate, the path of Lois Curtis. While Rob still faces challenges to community living due to his complex medical needs, he is, nonetheless, surviving and thriving. Rob’s quality of life is a gift from Lois Curtis. 

Rest in power, dear Lois.

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Jeneva and Rob Stone are members of Little Lobbyists. Jeneva is the Little Lobbyists Blog Manager.

Speaker Nancy Pelosi (l) and Elena Hung (r) embrace in front of the podium and an American flag. They are both dressed in white. The Speaker holds a brightly colored, framed drawing by Elena’s daughter Xiomara, given to the Speaker in appreciation of her work.

On December 14, 2022, a ceremony was held at the U.S. Capitol to honor Nancy Pelosi, who is the first woman Speaker of the U.S. House of Representatives, and who has twice been elected to that office. The occasion was the unveiling of her official portrait as Speaker, which will join the portraits of all her predecessors in Statuary Hall. 

Among the distinguished guests to offer their remarks and congratulations was our own Elena Hung, co-founder and executive director of Little Lobbyists. We here at Little Lobbyists wish to express our undying gratitude to Speaker Pelosi as a champion of our children and the access to health care all of us deserve. 

***

“Madame Speaker, members of Congress, distinguished guests, friends watching on the livestream: It is my great honor to join you today.

“When I reflect on Speaker Pelosi’s incomparable leadership, I think of the partnerships she so thoughtfully creates and nurtures – the inside maneuvering and the outside mobilization she has often spoken about: 

Partnerships between those who are most directly affected by the laws passed in this building and the members of Congress who draft and vote on them;

Partnerships between families like mine, who share our personal stories to put a face on policy, and the most powerful woman in the history of the United States Congress who chose to listen and uplift those stories;

Partnerships like these are how I, an immigrant mother of a disabled child, am here speaking before you now;

Partnerships like these are what makes it possible to pass and defend life-changing legislation like the Patient Protection and Affordable Care Act.

Elena Hung speaking during the ceremony. She is standing at a podium. Behind her are several marble and bronze statues of famous Americans, as well as three American flags. She is speaking to a large audience seated in chairs on the black and white tiled marble floor.

“It is no exaggeration to say that my daughter Xiomara, the joy of my life, and countless children with complex medical needs and disabilities like her, are alive today because of the ACA – and we have the ACA because of Speaker Pelosi.

“I often think of all the babies like Xiomara – whose five months in the Neonatal Intensive Care Unit totaled $3 million in medical bills – who now have a chance at childhood because the Affordable Care Act (ACA) banned lifetime limits on their care.

“Xiomara is 8 years old now – 8 birthdays that were never promised to a medically complex child like her. And as we await Xiomara’s next life-saving surgery, I am comforted knowing she has the health care she needs because of the protections of the ACA.

“Today, as we celebrate and express our gratitude for the Speaker’s remarkable accomplishments, what I hope will be most remembered as part of her legacy – and what I hope everyone sees when they look at this beautiful portrait – is that Speaker Pelosi did it all for the children. By working together in partnership – inside and outside – we are able to celebrate more birthdays with our children and build a better world that is worthy of them. 

“Madam Speaker, on behalf of Xiomara and all the Little Lobbyists children and their families, thank you.” 

***

You may watch the entire ceremony in this CSPAN video:

[video description: A play button hovers over a portrait of Speaker Pelosi, with the CSPAN logo in the lower left. Elena’s remarks begin at 29:37.]

Carly (l) and Grant (r) at the beach, standing at the shoreline. Grant wears a black, silver and neon-green swim suit. Carly wears a gold t-shirt and black skirt.

We want YOU to be a Little Lobbyists voter! We’re down to the last big race of 2022, the Senate run-off in Georgia, but we’ll be gearing up soon enough for 2024. So take our pledge to vote for candidates who will protect and expand the rights of children with complex medical needs and disabilities. We have to elect more candidates to office who share our belief in equity, accessibility, and inclusion to remove barriers and advance the policies our families need.

Voting is one of the most powerful ways to make your voice heard and make our country – from County seat to the U.S. Capitol – the more just and inclusive place ALL our children deserve, but we can’t do it without your vote. 

Take the pledge to be a Little Lobbyists Voter.

Here’s a story about Carly and Grant, who live in Georgia:

I’m mom to Grant, a smiley and affectionate five-year-old. Grant loves to swing at the park, swim at the pool with his fellow Angelfish, and play in the waves at the beach. When he's not enjoying activities outdoors, Grant can be found doing the Hot Dog Dance with Mickey and Toodles from Mickey Mouse Clubhouse, his absolute favorite show. Grant gives the best high fives, hugs, and fist bumps! 

Shortly after he was born, Grant was diagnosed with Total Intestinal Aganglionosis Hirschsprung’s Disease, a digestive disease that requires him to receive IV nutrition through a central line. He also has a g-tube and a jejunostomy. When he was two, Grant was diagnosed with Autism Spectrum Disorder and is nonspeaking–he communicates with picture exchange and will soon use an adaptive communication device.

Grant spent a total of 97 days in the NICU when he was born. Because Grant was on a continuous IV with a central line, we couldn’t go home from the hospital without in-home nursing lined up. Both my husband and I worked and would not be able to take care of Grant without a nurse. To get in-home nursing for Grant, we needed Georgia’s Katie Beckett Medicaid waiver. It took quite a bit of time and people to make it happen, but Grant was finally able to get the medical care he needed to go home.

Grant’s life was enhanced significantly thanks to Georgia’s Medicaid waiver coverage, and we are so grateful for the folks who helped us navigate a difficult process in a time of need.  But parents of medically complex children shouldn’t have to worry about how they are going to care for them when they come home.

That’s why we are Little Lobbyists voters and Health Care Voters who are excited to vote (again) for Senator Raphael Warnock in the runoff election. We need more leaders like Senator Warnock who will work to make sure caregivers of medically complex children are able to get the necessary care for their loved ones. Georgia is seeing more hospitals close their doors and many parts of the state without adequate numbers of healthcare providers. We need elected officials who will fight for kids like Grant to have the best care and the best lives.

Matthew Plantz at a local shopping mall. He wears a blue jacket and glasses, and sports a beard and mustache. Storefronts are behind him.

Our children with complex medical needs and disabilities will grow up to become adults with disabilities, so it’s important that we, as Little Lobbyists families, listen to disabled adults. Those of us who are parents may not have experienced life with a disability until our child did—who better to help us understand how to advise and guide our children than disabled adults? 

Matthew Plantz is a lifelong advocate for individuals with intellectual and developmental disabilities at the local, state, and federal levesl. He is interim director of People on the Go, and facilitator for People Power, a local self-advocacy organization. He serves on the Howard County Autism Society Board of Directors, Community Advisory Committee/Kennedy Krieger and the Maryland Inclusive Housing committee. Matthew, a resident of Maryland, shared with me his story about the importance of inclusion.

Hi Matthew! Tell us about yourself.

I'm 40 years old. I like going to baseball games. I like being a self-advocate. I like reading books: mysteries, books about World War II, and the Bible. I also like going to church. 

Tell me as much as you feel comfortable sharing about your medical needs and disabilities.

I've been legally blind since I was born 14 weeks premature. They tried to fix my eye. They couldn't do it, and they gave me too much oxygen. I've got ADHD, and in 2016 I developed diabetes type one, insulin dependent. I also have had mental health issues. I identify as part of the developmental disability community because I have an intellectual disability.

You’re on the board of directors of People on the Go, Maryland, an organization that is committed to ensuring that people with disabilities can live in the community of their choice. What are the biggest obstacles disabled people face to community inclusion? 

I was the vice chair on the board of directors, and I recently got promoted to interim president, until we hold elections again. 

We deal with a broken system not only here in Maryland, but all over the country. I mean, we've dealt with it for years. The underfunding of our staff. We can't get adequate staff. We can't retain adequate staff. If it's one thing Covid-19 has taught us, it brought to light what the disability community has known for years, that there's just not adequate staffing. 

There’s also a lack of understanding. And I mean on federal, state, and local levels. If you haven't been in our shoes, haven't walked the walk we people with disabilities have had to walk. It gets me a little upset when people say they understand, because I'm thinking to myself, “No, you don't understand. There's no way you can if you haven't had to walk in our shoes.”

What other barriers have you faced?

People tend to go to other people, and I don't get looped in on the conversation. It's like people with disabilities are kept out of discussions about themselves. My doctor knows he has to come to me first, not to my staff. I don't like dealing with middle men. Everything gets filtered through me first. Now, if my dad and my mom are communicating about me, that's fine. At least my mom loops me in on everything. But barriers between Human Services and the medical community need to come down because they don't always work together to where they understand a whole person.

Matthew Plantz wears a black baseball cap and a blue t-shirt. The photo displays the words, “I got my vaccine! A shot in the arm for the disability community.”

The disability community depends on Home and Community-Based Services (HCBS) in order to live in their communities. But there are lots of obstacles to getting HCBS. What needs to change?

HCBS needs to expand over the nation. A couple years ago, I heard of a study, and I don't know if it's still accurate, but I'm one of the few people who was lucky enough to get community-based services and I do not, I really do not think that HCBS goes far enough. 

The Biden Administration proposed all these great moves, but I don't think it ever went anywhere because I don't think lawmakers wanted to deal with it. The Biden Administration proposed that, I’ll give you an example, if my parents moved to Delaware, I could move with them. That the services would be interchangeable because waiting lists for services would be gone.

But my parents gave me an example: If they were to move to Delaware right now they could not take me with them. I would have to stay here in Maryland because if I went to Delaware, then I'd have to get reassessed and start from the ground up. I would have to reapply. If I were not disabled, moving wouldn't be a challenge. My parents don’t want me on a waiting list, so they’ve said they’re sticking right here. 

In the next Congress, we all hope a bill that increases money for Home and Community-Based Services will pass. Can you explain to Congress why that's so important for our community?

I think it would bring us out of the Dark Ages here in the United States. It would expand the services and make them better nationally. I'm gonna give an example: Here in the state of Maryland, there was a survey done that said it would be easier to help people in the community than have them in institutions. I mean, the survey I'm quoting might be old, but I think it's cheaper to have me at my house than it would be in an institution.

Too often parents and caregivers speak for people with disabilities, rather than with them. How did you first learn the power of speaking for yourself?

Well, I started out at Maryland School for the Blind. The sidewalks there were so bad, it wasn't even a joke. I told the president at the time who got me a meeting with the board of directors and I requested more money for the sidewalks to get improved. So that's my first experience with advocacy. It made me want to get more involved.

How has advocacy given meaning to your life?

I believe I was put on earth for such a time as this. I was not expected to live, I was born so early. My doctors wouldn't even get my parents a birth certificate until they knew I would live. So, I mean, to go from being almost on death’s doorstep, literally, to being an advocate is really amazing for me. 

If you could define advocacy in a single sentence, what would your definition be?

I would say it would give people with disabilities a voice and some freedom.

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 Jeneva Burroughs Stone is the blog manager for Little Lobbyists.

Laura Leeman and her children. Vic is seated in his wheelchair, and the others are gathered around him. The family poses in a park area and a sign that reads, “Vote Here,” is behind them.

We want YOU to be a Little Lobbyists voter! Take our pledge to vote for candidates who will protect and expand the rights of children with complex medical needs and disabilities. We have to elect more candidates into office who share our belief in equity, accessibility, and inclusion to remove barriers and advance the policies our families need.

Voting is one of the most powerful ways to make your voice heard and make our country – from County seat to the U.S. Capitol – the more just and inclusive place ALL our children deserve, but we can’t do it without your vote. 

Take the pledge to be a Little Lobbyists Voter.

As we lead up to the election next week, we will be sharing a few personal stories here about why folks are taking the Little Lobbyists Voter Pledge and who they are supporting with their vote. 

As we lead up to the election next week, we will be sharing a few personal stories here about why folks are taking the Little Lobbyists Voter Pledge and who they are supporting with their vote.

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My son Victor’s infectious laugh brings smiles to anyone near him. He loves all types of music and being outdoors, especially at the beach where he used to feel the wind on his face. Vic’s uncontrolled seizures went largely undiagnosed until last year, when he was found to have a rare genetic syndrome linked to epilepsy. While we’ve learned more about Victor’s medical health, having a genetic diagnosis does not give us a complete picture of the reason for his many seizures. 

This election is the most urgent and important one of our lifetime!  We’re hearing a lot about state and federal candidates, but make no mistake: the future of public education is on every ballot across the country. In every state and every public school district, our kids' right to a free and appropriate public education will be decided in this election.

I know this because my school district in Texas is the epicenter of this national effort to dismantle public education. Extremists are laser focused on full control of public education and are pouring money into candidates for local school boards. This takeover will bleed public school funds in numerous ways, and these extremists do not care about my or your disabled and medically complex child’s right to a free and appropriate education. 

Join Little Lobbyists as we advocate for all students to have access to all necessary supports and accommodations in an inclusive environment to attain their full potential.  We oppose tax funding being allocated to schools that discriminate against children with complex medical needs and disabilities of any kind. 

Connect with trusted voices in your community & VOTE for local school board candidates who are in favor of public education.

Gabbie (l) holds up two fingers in a peace sign. She has dark hair and wears a red jacket. Sarah (r) holds the camera for the selfie and wears over-sized sunglasses. They are on a sidewalk in a shopping area.

We want YOU to be a Little Lobbyists voter! Take our pledge to vote for candidates who will protect and expand the rights of children with complex medical needs and disabilities. We have to elect more candidates into office who share our belief in equity, accessibility, and inclusion to remove barriers and advance the policies our families need.

Voting is one of the most powerful ways to make your voice heard and make our country – from County seat to the U.S. Capitol – the more just and inclusive place ALL our children deserve, but we can’t do it without your vote. 

Take the pledge to be a Little Lobbyists Voter.

As we lead up to the election next week, we will be sharing a few personal stories here about why folks are taking the Little Lobbyists Voter Pledge and who they are supporting with their vote. 

***

Sarah May-Seward, a Little Lobbyists mom in Michigan, has taken her Voter Pledge to the next level. Instead of voting for other candidates, Sarah is running for the Michigan House of Representatives in District 51, so she is voting for herself! According to her the choice to run was an easy one:

"It's a natural thing to do. Moms see needs or problems, figure out why they exist, then work to fix them. Moms of kids with complex medical needs and disabilities know how to get creative to address issues and keep our kids safe."

Sarah is Gabbie’s mom. Gabbie is an amazing 18-year-old who has participated in school walkouts, the Women's March, and March For Our Lives. She has also become very vocal about the Americans with Disabilities Act (ADA). Gabbie has multiple medical diagnoses, including cerebral palsy and a birth anomaly that affects her brain. These are the result of a traumatic emergency that occurred during an ER visit when she was only 4.5 months old.

Gabbie depends on Medicaid to fund the services and supports that allow her to live an independent life in her community. And community is what it’s all about as far as Sarah and Gabbie are concerned. As Sarah said:

"I’m running because this is the community that raised me. When I was a kid without enough to eat, when our home burned down, when my adoptive parents weren’t safe for me, this community stepped up. It’s my turn to step up for them. I’m running because as a bartender and as a mom to a kid with disabilities, I don’t shy away from service, and hard work, and I certainly don’t turn my back when it comes to fighting to protect the people I serve."

As a member of the Michigan House of Representatives, Sarah will help ensure that all Michiganders have access to the health care, education, and community inclusion they need to not just survive – but THRIVE.

The Witzler Family enjoying a hike along a riverbank. Peter (l) wears a yellow shirt and baseball hat. Jackson, who wears jet-fighter-style sunglasses and is making a peace sign, is strapped to Peter’s back in a child carrier. Lisa, Jackson’s mom (foreground), wears a pink shirt and sunglasses. Jackson’s brother Teddy is in the background, wearing a blue shirt and looking into the river.

We want YOU to be a Little Lobbyists voter! Take our pledge to vote for candidates who will protect and expand the rights of children with complex medical needs and disabilities. We have to elect more candidates into office who share our belief in equity, accessibility, and inclusion to remove barriers and advance the policies our families need.

Voting is one of the most powerful ways to make your voice heard and make our country – from County seat to the U.S. Capitol – the more just and inclusive place ALL our children deserve, but we can’t do it without your vote. 

Take the pledge to be a Little Lobbyists Voter.

As we lead up to the election, we are sharing a few personal stories about why folks are taking the Little Lobbyists Voter Pledge and who they are supporting with their vote. 

***

My son Jackson is an amazingly funny, strong-willed, independent 7 year old who loves Legos and playing Nintendo with his big brother Teddy. He just started playing sled hockey and according to his coaches is a real natural, quickly learning how to skate, pass and shoot at his first practice. Jackson was born with Spina Bifida. He uses braces and a walker or wheelchair to get around, and uses a machine to make sure he keeps breathing at night. During his first six months of life, he endured three brain surgeries, spending more time in the hospital than home with his family, and racking up over a million dollars in medical bills. 

As Jackson now grows into a healthy, strong young man, he’s going to depend on Maryland's Home and Community-Based Services (HCBS) and other supports to live independently, life-long, in his community. Unfortunately these services are massively underfunded. In Maryland, there are 31,000 people on HCBS waiting lists; nationwide, 820,000 people are waiting for services. 

That’s why I’m a Little Lobbyists Voter who is pledging my vote to candidates who will work to ensure every child like Jackson in Maryland will have access to the health care, education, and community inclusion they need to not just survive – but THRIVE.

That's why I am thrilled to be voting for Wes Moore and Aruna Miller for Governor and Lieutenant Governor of Maryland. As a parent of a kid with complex medical needs and disabilities, it sometimes feels like we are all alone in our struggles. Wes Moore’s message, “Leave No One Behind,” really resonates with me. 

I know with Wes Moore and Aruna Miller at the lead, our state agencies will be working hard to get those 31,000 Marylanders off waiting lists and into their communities, where they belong. I know that we’ll have willing partners and allies to improve and expand services. I know that Wes and Aruna will not leave families like ours behind to fend for themselves. 

Peter Witzler (r) poses with Wes Moore (c) and another man (l) at a political event. All three men are wearing suit jackets and ties. They are standing in a conference room with a banquet table to the left.

Becki & Izzy Ucello pose on a sidewalk. Becki is wearing glasses—both have long blonde hair. Becki wears a t-shirt that says “embrace,” and Izzy wears a t-shirt that says, “Inclusion Everywhere.”

We want YOU to be a Little Lobbyists voter! Take our pledge to vote for candidates who will protect and expand the rights of children with complex medical needs and disabilities. We have to elect more candidates into office who share our belief in equity, accessibility, and inclusion to remove barriers and advance the policies our families need.

Voting is one of the most powerful ways to make your voice heard and make our country – from County seat to the U.S. Capitol – the more just and inclusive place ALL our children deserve, but we can’t do it without your vote. 

Take the pledge to be a Little Lobbyists Voter.

As we lead up to the election next week, we will be sharing a few personal stories here about why folks are taking the Little Lobbyists Voter Pledge and who they are supporting with their vote. 

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My daughter Izabella is a beautiful, happy girl who just celebrated becoming a teenager.  She is kind and compassionate. She loves to bake cupcakes, and she loves to create art. Izabella also connects with people about the importance of inclusion and accessibility. As a wheelchair user, it is important for her to find places where she can enjoy socializing with her friends, whether it is at school, at church, or anywhere else in our community.

Izzy Ucello and her dad. Izzy’s dad is holding a sign that reads, “St. Agnes Father & Daughter Dance 2022.” He wears a cream shirt under a blue & white checked suit jacket covered with red and orange flowers. Izzy wears a gold lame gown. Behind them are gold streamers and red & gold balloons.

Izabella was born with spina bifida and hydrocephalus, which means she had a hole in her spinal cord and swelling in her brain. Within just 24 hours of being born, she had her first two surgeries: one to close up her spinal cord, and another to place a shunt to correct the hydrocephalus. With continual access to excellent healthcare and a supportive community of friends and family, Izabella survived and continues to thrive!  

Missouri voters have been focused on the current Senate race. I believe that Trudy Busch Valentine is the candidate who will put the interests of Missouri over political partisanship. She looks for common ground among Missourians.  Most important to me, the mom of a medically complex child, is the fact that Trudy Busch Valentine is a mother and a nurse. She understands the importance of quality healthcare for our children. In the U.S. Senate, Trudy will protect health care coverage for Missourians, cut the cost of prescription drugs, and hold big insurance and pharmaceutical companies accountable for raising costs. She will also fight attempts to remove protections for insurance coverage for people with preexisting conditions. Trudy believes that good health care is more than just the care of our physical bodies; we need to invest in mental health services so Americans can flourish and lead productive, healthy lives. 

I’ll also be voting for Kristen Radaker Scheafer, who is running for Missouri’s 7th Congressional District. In addition to gun safety measures, Kristen supports increasing access to mental healthcare. From personal experience, I can say that Kristen listens to her future constituents.  She cares about what we have to say about healthcare and education.  She is about representing ALL of us.  “My purpose is to take the voice of the people of Missouri’s 7th district to Washington, not to bring a partisan voice from Washington back to Missouri,” she says.  

On November 8, I will gladly vote for Trudy Valentine for U.S. Senate and for Kristen Scheafer for the U.S. House of Representatives.

A photo of some of the supplies necessary for enteral feeding. Depicted are a g-tube “button” or “peg,” syringes (catheter tip, slip-tip, luer lock), a feeding bag, and g- and j-tube extension sets. The equipment is made of translucent plastic, with white, aqua and purple accents. These are all “legacy” supplies. Each of these has an ENFit version, but the Stone family does not have all of these pieces yet.

My son Rob is a 25-year-old artist and activist. He’s survived and thrived in his community because he has had access to enteral (or “tube”) feeding for all of his nutrition, hydration, and medication needs since the age of two. Tube feeding isn’t shameful; it’s just another way of eating, and Rob has grown into a healthy adult because of this life-saving adaptation. 

Yet, Rob’s feeding disability leaves him vulnerable. Unlike his peers, Rob can’t buy disposable utensils at the market in a pinch, nor can he eat with his fingers if he has to. Rob eats and drinks using a system of medical feeding bags, extension sets, and specialized syringes covered by insurance, and available through medical suppliers. His life depends on the availability and compatibility of his supplies.

Two weeks ago, Rob and I first heard of the ENFit transition when our medical supplier told us his “legacy” enteral equipment would no longer be available. Many other families found out this fall when they began receiving mixed lots of supplies: ENFit and their usual. This is creating mind-boggling problems for tens of thousands of American families.

Centers for Medicare and Medicaid Services (CMS) data from 2013 estimate there are 189,036 pediatric and 248,846 adult enteral users in the United States, for a total of 437,882 people.

As of 2020, the Feeding Tube Awareness Foundation estimated that ⅔ of U.S. enteral users had successfully transitioned to ENFit products, leaving ⅓ of users yet to transition. If you’re one of the remaining 146,000 families who are just learning about ENFit, you’re not alone. 

ENFit is an effort to standardize all connectors in enteral feeding systems, for two good reasons:

1. To reduce medical errors: the variety of syringes and connectors available (luer lock, slip-tip, catheter-tip, and Christmas tree) fit both tube feeding equipment and many other medical systems, including IV, catheters, tracheostomy, etc. 

2. To prevent accidental disconnection of feeding tubes, which can easily happen with the legacy connectors, and to reduce leaks.

Rob Stone at a neighborhood party. Rob is seated in his wheelchair and wearing a light blue wheelchair cape. His cheek has been painted with a Rolling Stones logo, the red and white lips and protruding tongue.

In 2006, hospitals, families, suppliers, and others became concerned about medical mistakes made with tube-feeding connectors that had resulted in deaths. A trade organization called the Global Enteral Device Supplier Association (GEDSA) was formed to study the issue. GEDSA recommended standardizing all enteral supplies, and an awareness campaign began in 2014, with a planned transition to take place between 2015 and 2018. The Oley Foundation and the Feeding Tube Awareness Foundation were instrumental in getting the initial word out to families. The Oley Foundation has an archive of articles about the ENFit transition. The online resource Complex Child has a great article on ENFit’s benefits. 

However, not all families are active with these organizations, nor do they attend conferences on enteral feeding. Many families simply rely on Medicaid, their private insurer, and/or their medical supply company to keep them informed. 

Between 2018 and 2022, the ENFit transition stalled, for reasons that are not clear. Then in mid-2022, the legacy supplies families relied on began to vanish, because manufacturers discontinued them, apparently without adequate advance notice to suppliers or families. 

The sudden disappearance of legacy enteral supplies is causing serious problems for many families, right now, without adequate support or assistance from GEDSA or any other organization, including the FDA and Medicaid. Some families are receiving only some ENFit components, and not others. Many families have reported that their medical supply companies are refusing to provide ENFit syringes, which makes it impossible for families to administer vital medications, or, in some cases, hydrate or feed their loved ones, as ENFit and legacy supplies are not compatible.

Giving medication through a syringe sounds relatively easy, but if you are an enteral user, your syringe, your extension set, your medication bottle dispenser cap, and, if you use one, your medication delivery bag must all have compatible connectors. 

Many suppliers are claiming that syringes are the responsibility of pharmacies, which, you should know, is not true. Both private insurers and Medicaid pay suppliers for a daily enteral “package,” which is supposed to include syringes–although the number of them is not specified. If you aren’t getting syringes, your medical supplier may be cheating Medicaid or your insurance company in order to increase profits. 

What is even more alarming? Many manufacturers of medical supplies are using the ENFit transition to price gouge and profiteer. On Amazon, ENFit syringes are selling for up to 10 times the cost of luer lock, slip-tip, or catheter tip syringes. It is difficult to find syringe adaptors online, and prices for these are excessive, as much as $100 per adaptor. 

While families can purchase some ENFit and ENFit-adaptor products in bulk at Health Care Logistics (a wholesale company), bulk purchase is expensive! While nozzle adaptors are only $0.46 apiece on that site, you must buy 100 of them, spending $46. The same goes for bottle adaptors for medications, which run over $130 per 100. You can research more products here, but most are not available for sale to families. Enteral feeding bags and extension sets are not typically available for direct purchase, either.

Besides, many of our families do not have that kind of cash–disability is expensive enough as it is in our society, and the net result of the ENFit transition? Many families are stranded with no immediate options other than to pay through the nose for adaptive equipment, all while fighting with suppliers to ensure that insurance-covered and compatible products are actually delivered. Our loved ones need their medications, food, and hydration now; they cannot wait several months while this situation is resolved.  

What can you do? You can contact your insurance company or State Medicaid authority to request information on the availability of ENFit supplies, as well as the number and type of syringes that are supposed to be provided by your supplier. You can also access resources at the Oley Foundation and the Feeding Tube Awareness Foundation to familiarize yourself with ENFit products. You can contact GEDSA and ask them how ENFit adapters can be made available cheaply for families who need them, as well as their plans for addressing profiteering by manufacturers and suppliers, the entities GEDSA represents.

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Jeneva Stone is the Little Lobbyists Blog Manager.

This is the feeding system G- and J-tube users have relied on for decades. Note how the white nozzle fits snugly into the extension set. [image description: A MOOG feeding bag (with aqua and purple features) is connected to an extension set.]

“Hey there”, my email to our enteral supplier began in as friendly a tone as I could muster, “We received my son’s tube-feeding supplies and after his home health aide went to hang one of the  bags, she realized that the wrong feeding bags were sent. We usually get INF0500-A (with nozzle). This time we received INF0500-E (without nozzle). We tried one of the INF0500-E to see if we could get it to work without the nozzle but it leaked into his bed. Can we please get the correct bags sent as soon as possible?”

The response came quickly, informing me that the manufacturer is no longer making the INF0500-A, the product we have used for over a decade when my son had surgery to place a gastrostomy tube and we learned a whole new vocabulary:

In this photo, the white nozzle is removed from the purple ENFit tip. The old-style extension set does not have a matching screw-in end. If the purple end is plugged into the extension, fluid leaks around the gaps in the threads, which do not correspond with the grips on the extension set. [image description: the same feeding system, but with the white nozzle removed.]

• A gastrostomy tube (aka, ‘g-tube’ or ‘peg’) is the plastic button inserted in the stomach through a surgical opening called a stoma. Because my son cannot swallow liquids safely, this is how he drinks water and takes medication–just like thousands of other disabled people. For several years my son took all his nutrition via this tube, just like many people who cannot swallow safely at all; this was how he ate. 

• Extension sets are tubes that connect the ‘peg’ to the syringes or feeding bags used to give medication, food, and water.  

• Enteral means anything that passes through the intestines. We get all the above items through an enteral supplier. 

• I’d thought there was just an issue with the feeding bags, but then the supplier threw me another curve ball, saying that the new extension sets sent with our last shipment were compatible with the new bags. 

What new extension sets? I wondered. I asked my son’s home health aide. She said there were some unfamiliar supplies she had put away and showed me the new purple-adorned extension sets that connect the gastrostomy tube to the new purple-adorned feeding bags. The lovely purple ends on each screw into one another. However, the medication syringes we have available do not have these purple screw connectors and once we run out of our stock of the old extension sets, I will not be able to give my son medication.  

This new system is called “ENFit” and as much as my son and I like the snazzy purple, we now have lots of 60cc and 10cc syringes that are not compatible with it. I asked our supplier if I could get more of our original extension sets, but, apparently, they have been discontinued, too. “Oh,” I snapped, “Was anyone going to tell the people who actually use these supplies?” 

Realizing that I might soon be unable to give my son the medications that we use over fifteen syringes for each day, I asked, “Can we get medication syringes that work with this new system?”  The supplier said syringes are the responsibility of  pharmacies, not enteral suppliers. I asked why the change was happening so suddenly and without notice, given the vital importance of these supplies. 

The new ENFit extension set is pictured. Because the standard syringe is not designed with a screw-in end, the syringe cannot be connected. Sandra’s family cannot locate any of the ENFit-compatible syringes. [image description: A pair of hands with aqua nail polish holds a standard medical syringe, demonstrating that it cannot fit an ENFit extension set, which has a purple end.]

Minutes later I received an email from the supplier with a link to a Businesswire website wherein the Global Enteral Device Supplier Association (who knew there was such a thing?) declared their support for ENFit on behalf of patient safety, noting that the change was “supported by clinicians, regulatory agencies, patient safety organizations, Group Purchasing Organizations (GPOs), Durable Medical Equipment providers (DMEs), manufacturers and suppliers.” Now that the ENFit parts screw into each other, there is less chance for accidents, spillage, and medication errors. 

This is a standard slip-tip syringe fitted snugly into the port of an old-style extension set. [image description: a 10 cc medical syringe is connected to a feeding extension set.]

Sounds great! But one group in that long list of supporters is missing: gastrostomy tube users themselves. What are disabled people and their families supposed to do during this mismanaged and incomplete transition?

I called our local pharmacy. Staff told me their suppliers do not carry the purple ENFit products and, in any event, they are on backorder. I called our specialty pharmacy who directed me to the pediatrician. The pediatrician’s office is trying to locate these syringes, but staff are telling me they are hard to find. 

In the midst of this mess, the group chat for my tube-feeding support group lit up. “They switched us. Halfway. Brilliant,” one texted. “I have the new syringes if you need some,” offered another. “How did you get them?” I asked. “The supplier sent them, but I had to ask. Our supplier also did it without much notice or a real transition plan,” was the reply. 

For now, my family is switching back and forth between the old parts and the new parts (literally connecting and disconnecting two different extension sets to the tube in my son’s body) as we give him medication or water, depending on which syringes or bags we do or don’t have. We’re spending down the last of our precious non-purple extension sets, using them past their typical expiration, while we figure out how to get the ENFit syringes without privately paying every month for boxes of supplies that our insurance policy covers.

This unnecessary scramble could have been avoided if the Global Enteral Device Supplier Association (Twitter handle @GEDSA_org) had involved g-tube users and their families from the beginning in the ENFit transition, instead of relying on the “expertise” of executives at manufacturers, hospitals, and facilities. People who live day-to-day with gastrostomy tubes understand ALL of the consequences of a switch in supplies, including the interdependencies of compatible tubes, pumps, bags, extension sets, and syringes. Until the disability community and caregivers are centered in these decision-making processes, we will continue to scramble, urgently and reactively, to the missteps of the industries we rely on. 

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Sandra Joy Stein is a writer and educator who lives in New York. Her son gave permission to tell this story, but did not want his name or photo in this piece. 

Rob earlier this summer, before he contracted Covid. Rob is at an outdoor art class. He is seated in his wheelchair with a tie-dye surgical mask over his tracheostomy tube. His dad stands next to him, holding up a white t-shirt with a design Rob drew on it for the class project.

I’ve had some reasons for optimism about the pandemic, including the development of vaccines and treatments, but my community is still in danger, and it seems that nondisabled folks care less and less.

I can remember the early days of the pandemic, thinking that nondisabled people might finally understand the access barriers to, well, just living, and to medical care that people with disabilities have been living with forever. That the experience of having had life dramatically upended might lead to greater awareness of the struggles people with disabilities face daily. But, in the end, nondisabled people just wanted to “get their lives back” and it didn’t matter what disabled people needed.

My disabled son Rob, artist and disability rights advocate, was taken to the ER recently with a case of Covid. Rob is vaccinated and boosted, and has avoided Covid for two and a half years, but it finally got him. 

Rob was treated with an effective antiviral medication and responded well; however, the way he was treated during his hospitalization was appalling.

Rob has a complex form of dystonia with little voluntary movement, and he is nonspeaking. He cannot be left alone when hospitalized. While the hospital put up no resistance to my husband and myself doing shifts to create a 24/7 advocacy presence in Rob’s hospital room, its policies were set up to prioritize staff over patients. 

Despite two and a half years of developing Covid “rooms” in hospitals, Rob’s IV lines were strung across the floor for at least six feet, and through a door hinge to IV pumps placed outside his room. Surely there are better ways to handle this to balance staff safety with patient safety.

Despite the fact that Rob has a personal baseline plan for tracheostomy and pulmonary care, the hospital’s ICU attending physicians pushed back on implementing this, without giving clear reasons. Despite the fact that Rob chose myself and my husband for his medical power of attorney.

Despite the fact that there’s a mind-boggling home health care worker shortage, and home nursing is perhaps even more affected than other categories of home care, the hospital attending pushed to discharge Rob before it was clear I could re-establish Rob’s home nursing supports (which are not 24/7). 

Because the federal government and states are not providing enough funding for Home and Community-Based Services, Rob still relies on his dad and myself for “natural supports.” But when we risk becoming ill ourselves with Covid and needing isolation and/or rest, Rob is at risk for losing his HCBS waivers altogether, due to flaws that must be addressed in Medicaid’s institutional bias. So Rob’s civil rights, altogether, are at risk in a hospitalization for Covid. 

As I’ve reflected on this experience, I am grateful for vaccines and effective treatments for Covid. But it is also clear that hospitals are simply OVER Covid and they are OVER dealing with disabled people who have it. 

While the country is throwing away masks and getting on with their lives, the message to people like Rob and my family is pretty clear–you just have “special” needs; you don’t have a right to be part of society; we don’t have to accommodate you. You’re just part of that group of people who were going to die anyway.

And so, without either the federal or state governments setting Covid policies that protect the civil liberties and the very lives of disabled people, my people will continue to be vilified. Our disabled children will continue to get inferior educations (because most school boards seem anxious to use Covid to undermine the IDEA), our people will continue to die unnecessarily, and our people will continue to be shut out of the community presence we established through persistence and hard work prior to the pandemic. 

In closing, it is amusing and enraging to listen to folks on social media debate the fairness of student loan cancellation, arguing that same old saw about “personal responsibility” that never seems to apply to situations where the pontificator really ought to be personally responsible. Like, say, wearing a mask to protect other people. 

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Jeneva Stone is the Little Lobbyists blog manager.

Grace Dow (r) with her young sister (l) at Grace’s high school graduation party. Grace wears a red shirt and is using an adaptive walker, and her sister a blue shirt. Both women have dark skin and dark hair. They are in a room set up for a party with red and blue balloons and tables covered with white table cloths.

Adulthood is a challenging time for most young adults and their families. For adults with disabilities and their parents, it’s extra challenging. As an adult with Cerebral Palsy, adulthood has been more challenging than I’d imagined. Luckily, my parents have been supportive. I am lucky to have a large, extended family as well.

My parents made sure that I knew what Cerebral Palsy was when I was young. I knew that I was different from most of my peers when I was growing up. An emphasis was always put on my strengths, and while this was helpful, I wish that I'd had a better understanding of how Cerebral Palsy would affect everyday life. It is essential to let your child know that they may have challenges and limitations as well. I was unaware of how my disability would affect adult milestones such as employment and marriage.

When I was young, I played baseball through a program called Buddy Baseball. I liked being around other people with disabilities. I also played sled hockey as a teenager. I met people with various disabilities through sports. Massachusetts has ample recreation opportunities available for disabled people. I felt like I belonged while playing sports. 

As I grew up, though, I had lots of questions about my future. I knew that I wanted to have a career. I wanted to live on my own one day. I even hoped to get married. I had goals, but had no idea how to achieve them. My parents encouraged me to follow my dreams. They helped me explore different careers, and what I might be interested in doing in the future. In my senior year of high school, I began working with my local vocational rehabilitation office. Unfortunately, their services didn't work well for me. High staff turnover led to me working with three different counslers, and it was difficult to get in touch with them.  Figuring out what kind of career I want to pursue has been a challenge. Since last year, I've run a blog where I write about my experiences as someone with Cerebral Palsy. I eventually want to make writing my full-time job. Writing is one of my passions in life.

Grace Dow (l) and her best friend (r) are seated next to a table with a display about adaptive sports. The trip-fold display has many photos and descriptive text boxes on it. Grace is wearing a white button-down shirt and has dark skin and dark hair. Her friend is wearing glasses, a winter hat and coat and has light skin and light hair.

One of the most important things my parents have done since I have become an adult is help me navigate life as a disabled adult. I knew very little about independent living and what it would look like. My parents made me aware of resources such as the local independent living center. I also received a laptop computer through United Cerebral Palsy. I moved out two years ago, and my parents were nervous. They provided many of the furnishings and other equipment for my apartment which included a bath bench, an electric bed, and a new dresser.

For me, figuring out healthcare has been difficult. I received a new power wheelchair last year, and it was a complicated process that took over a year. My parents helped throughout the process, but they didn’t do the work for me. They helped me write an appeal to my private insurance company and fundraise for the seat elevator. Before turning 18, my parents did all of the advocacy on my behalf. They wrote letters and made phone calls to insurance companies. Back then, I was glad that I didn’t have to figure it out on my own.

My parent's role in my life has changed since I became an adult. They are now supporting me rather than doing things for me. I am fortunate to have two parents who have always been loving and supportive.

The transition to adulthood is a challenging time for everyone. It is even more difficult when your child has a disability. With support, adults with disabilities can live their lives to the fullest.

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Grace Dow is a writer and advocate for those with disabilities. She lives in Massachusetts. In her free time, Grace enjoys reading, watching movies, and being with her friends and family. Please visit Grace’s blog!