Little Lobbyists pose in a row with the U.S. Capitol Building in the background. It’s a beautiful day, and they wear colorful clothing. The children are very young. Some use adaptive strollers, and some stand.

This week marks the 50th anniversary of the Rehabilitation Act of 1973, which opened doors to jobs, education, independent living, and much more for people with disabilities. The Act also established standards for accessible communication and information technology. 

The Rehab Act (as it’s often called) is the foundation for civil rights for people with disabilities in the U.S., and at its heart is Section 504, which prohibits discrimination on the basis of disability “under any program or activity receiving Federal financial assistance.” Disability rights activist Judy Heumann, who was instrumental in the fight for the Rehab Act, reacted this way, “I read the sentence over again, took my glasses off, rubbed my eyes, and read the sentence one more time … This sentence acknowledged that the way we were being treated was actually discrimination.” 

Until the Rehab Act passed in 1973, people with disabilities had been excluded from the protections of the Civil Rights Act of 1964. No one knows who inserted civil rights language into a bill that had been primarily focused on disability employment, but it changed history without amending the Civil Rights Act. Nonetheless, it would take four more years and a famous 26-day sit-in by disabled activists in the U.S. Health, Education and Welfare offices in San Francisco before Section 504 was finally implemented. 

What’s the Difference Between Section 504 & the ADA?

While most people think of the Americans with Disabilities Act of 1990 (ADA) as the first law that established civil rights for people with disabilities, Section 504 predates it and lays the groundwork for the ADA. 

The basic difference between the two laws lies in how each law guarantees rights. Section 504 prohibits discrimination against people with disabilities who participate in programs funded by the federal government–among these are Medicaid and Medicare, public schools, federal employment, federal buildings and public housing. The ADA builds on 504, extending civil rights for disabled people to everyday life in both the public and private sectors, such as businesses and other parts of government. 

In addition to launching the Americans with Disabilities Act, 504 further impacts the lives of disabled people through the Individuals with Disability Education Act (IDEA) that grants disabled students the right to inclusion, and the U.S. Supreme Court’s Olmstead Decision which determines that disabled people have the right to choose where they live.

What Does This Mean for Our Families Today?

The fight to have the 504 regulations made into federal law was long and bruising–at the time, the very idea of considering people with disabilities citizens with equal rights was tremendously controversial. Businesses and others tried to get rid of Section 504 after the Rehab Act was passed, claiming it would be too expensive and difficult to adhere to. Although disability rights prevailed and 504 remains law, even today, we are still fighting for the rights of people with disabilities to live where they choose, receive basic medical care, and prove that disabled lives have equal value. 

Judy Heumann poses with Little Lobbyist Rob Stone in a bookstore. There are bookshelves behind them, and Judy is signing a copy of her memoir for Rob.

In the 50 years since it passed, Section 504 has never been revisited or revised. Since 1973, though, our society has changed dramatically: the personal computer has become an essential part of everyday life; the internet is available to the public; health care has become far more complex and sophisticated; our disabled children are included in public school; progress has been made in closing institutions; and more and more disabled people live, work, and play in their communities. 

That’s why, this month, the Biden Administration announced plans to revise and strengthen the 504 regulations for the U.S. Department of Health and Human Services. Because it’s about time, and care can’t wait! The legal and social changes of the last 50 years need to be aligned with Section 504.

When the federal government wants to issue new or change existing regulations to current law, it must post a Notice of Proposed Rulemaking (NPRM) in the Federal Register and give the public time to comment. This NPRM on Section 504 makes changes to improve or clarify key areas of nondiscrimination in health care and human services, including:

• Discrimination in medical treatment, especially organ transplant and public health emergencies;

• Accessibility of medical equipment, including exam tables, weight scales, and mammogram equipment;

• Web, mobile app, and kiosk accessibility, so that disabled people can equitable access medical care and check in for appointments;

• Child welfare programs, to prevent discrimination against disabled parents and disabled foster parents;

• Community integration, to ensure that disabled people are able to live in their communities as established by the U.S. Supreme Court’s Olmstead Decision of 1999; 

• Value assessment methods, to prevent the devaluing of disabled lives when physicians and insurers determine who is eligible for treatments, operations, and medications.

We thank the Biden Administration for making progress on civil rights for people with disabilities, and we look forward to these crucial updates to Section 504.

Can you envision a world in which a wheelchair user can be weighed every time they go to the doctor? Or get a mammogram easily? One in which waiting lists for Medicaid programs are a thing of the past? Or one in which disabled lives are always valued the same as nondisabled lives? These updates to Section 504 can help make these dreams a reality.

The Biden Administration is asking for our help to make the proposed changes as effective as possible. If you are a member of the disability community, your lived experience can provide much-needed insight. If you would like to be a part of improving the lives of disabled people and their families, please read through the NPRM, and, if you have a comment or suggestions, submit it at this link before November 13, 2023.

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Jeneva Stone is the Little Lobbyists blog manager. If you have an idea for the blog, or would like to write a post, contact her at: jeneva@littlelobbyists.org!

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

The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families. As the budget process moves forward, here’s what’s at stake for Grace Dow:

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

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

While we’re grateful the Biden Administration successfully protected Medicaid from being cut, it is already deeply underfunded. At least a million people are already on waiting lists for Home and Community-Based Services (HCBS), medical costs continue to rise, and care for our families could be compromised. How would that affect you?

Grace bending down to touch a dolphin at an aquarium.

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

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that have affected you when you were younger? And how will that affect children today?

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

Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have  introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.

Ethan speaking in a microphone at his church. He’s standing with the assistance of a gait trainer.

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

The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.

Ethan is 14 years old and will start high school next fall. He loves to sing at church and with his local community choir. He also participates in therapeutic horseback riding and is a member of his church youth group. This month, he will become a commissioned member of our church. Ethan also loves music and taught himself how to play ukulele during the lockdown. He dabbles with the guitar and piano. 

Ethan volunteers with social programs within the community and knows that giving back is so important. He has worked with programs at our church to support the homeless community, and to feed and cloth refugees new to our community.

Ethan was born with congenital myasthenia  syndrome, which affects the communication between his brain and muscles, leading him to have low muscle tone. He also had dislocated and subluxated  hips, so he uses a wheelchair for long distance and for greater independence. In addition, his diaphragm had to be placated so that his lungs had room to develop. As a result of this, he has a tracheotomy and uses mechanical ventilation at night.  

While we’re grateful the Biden Administration successfully protected Medicaid from being cut, it is already deeply underfunded. At least a million people are already on waiting lists for Home and Community-Based Services (HCBS), medical costs continue to rise, and care for our families could be compromised. How would that affect Ethan?

Through Medicaid, Ethan has weekly physical and occupational therapies to improve range of motion, which helps him to be more independent. He’s also able to see a variety of specialists at UVA Children’s Hospital because Medicaid picks up their co-pays. In addition, Medicaid pays for Ethan’s respiratory supplies, as well as his power wheelchair so he can be independent at school, engage with his peers, and participate in events like his 8th grade school dance and church youth services.

Without Medicaid, we would have to prioritize what parts of Ethan’s life are most important. Because of Medicaid, we can focus on Ethan’s whole self, not just the parts most in need of help.  

Ethan’s monthly medical bills exceed what his father and I make as a teacher and social worker. Without Medicaid, our family would quickly become homeless because we would be paying thousands of dollars a month for things our private insurance doesn’t cover. We would have to choose shelter and food for all of us, or health care for my son. He might end up in the care of the state because we would be unable to meet his medical needs. Our lives would be shattered. Ethan is my heart, and he is loved by so many within his church community who have been inspired by his will and determination. 

Ethan riding a horse during equestrian therapy—he’s accompanied by three aides, who are leading the horse around an outdoor paddock with a clapboard fence in the background.

Medicaid has helped Ethan live his best life, and now it’s his job to help others live a better life. With his small contributions, he is doing similar good for others. 

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that affect Ethan?

Ethan has an Individualized Education Plan (IEP) that enables him to receive services like a scribe for long writing assignments and breaks due to the fatigue he deals with as a result of his muscles. Additionally, the school provides transportation on a school bus with a wheelchair lift, so he can have his power chair at school to be independent.  

Medicaid pays for a private duty nurse so Ethan can attend school. Without access to private duty nursing, my son would lose his ability to attend school, and either my husband or I would have to leave our jobs as a social worker and teacher. Ethan would not receive the education that he will need to take his place in society. 

Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have  introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.

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

Image Description: Miles, is seated in an adapted chair in his school classroom, holds a hand-drawn poster of an alligator with the title, “See You Later Alligator!", which is signed by various persons at the school. There’s a bulletin board and balloons behind him. Miles is smiling and he wears eyeglasses.

In exchange for raising the debt ceiling, Republican leaders are demanding extreme cuts to essential programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families.

Miles is finishing up 2nd grade. He loves music, especially theme songs! If there’s a device nearby with access to the internet, Miles will find his favorite videos on YouTube before you can say “hey … where did my phone go?” Miles can’t speak by mouth yet, but says a whole lot with just his eyebrows. He is also learning to use a “talker” (AAC device) to communicate even more. He has two brothers he loves very much, and no one can make him laugh like his Daddy. Miles loves cuddling with his Mom and getting her to sing along to his favorite songs. 

Miles has a rare skeletal dysplasia that comes with a lot of complex medical issues. Up until last year, he needed a breathing tube and ventilator. He still gets all his food and drink through his feeding tube. His complex GI issues cause chronic belly distention that requires a lot of hands-on skilled care throughout the day, so Miles can keep moving! He doesn’t stand or walk independently yet, but is learning how! 

The Congressional Budget Office (CBO) estimated the Republican debt ceiling bill would cut Federal Medicaid funds by kicking 1.5 million people off their health coverage annually. It would also increase the amount states pay for Medicaid by $6.5 billion per year. Experts predict that many states would end Medicaid coverage as a result. How would that affect Miles?

Miles is able to live safely at home with his family and attend a public school with his friends and brothers thanks to Medicaid. We have “good health insurance” from our employers, but it does not cover even half the things Miles needs. His life in the community is possible because Medicaid gives him access to the specialized doctors, medical equipment, and services he needs to not just live, but thrive. 

Medicaid provides private duty nursing to make sure he has hands-on skilled care to attend school and be cared for while we are working and handling other life responsibilities, or just being Mom and Dad to all three of our kids. Our employer-based insurance does not cover this service. The (covered) alternative is Miles living in a skilled-nursing facility away from his home and family, and not receiving the nurturing care he deserves to live his life the way he should. 

Medicaid has given Miles access to the Skeletal Dysplasia Clinic at an out-of-state hospital whose doctors have guided his unique, complex medical care since before he was born. Their expertise not only saved Miles’ life on multiple occasions, it also increased his quality of life. Without Medicaid, our silly, strong, incredible Mr. Miles would not have access to the care and services he needs–the care that has allowed him to become the dynamic little boy he is and will allow him to develop into whoever he is meant to be.

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Despite the fact that the Federal government pays only 16% of IDEA costs, Republicans want to cut an additional $31 billion over the next decade. This year alone, our kids would lose $3.1 billion, equivalent to firing 48,000 special education teachers and inclusion personnel, affecting 7.5 million students with disabilities. How would that affect Miles?

Image description: A close-up of Miles in his family’s home. He’s smiling and he’s definitely “talking” with those eyebrows!

Miles goes to the same school as his brothers. He is very popular and has taught a lot of other kids–and educators–about the importance of accessibility and inclusion. Miles’ access to school is dependent on robust funding to allow his teachers and administrators to create an environment that Miles can access meaningfully! His teachers have specialized training and use endless tools and resources to adjust to the unique ways Miles can do things. 

Without specialized seating, adaptive equipment, walkers, physical therapy, occupational therapy, his AAC device (talker!) and speech therapy services, Miles would not be included in a mainstream school with his peers. His learning and his physical, social, and emotional development would all suffer without services provided through IDEA.

Republicans claim they need to cut these programs to cover the U.S. deficit, but that’s just not true. As House Republicans voted to cut our kids’ health care and education, they also introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

It seems like Congressional Republicans want our kids with disabilities to cover the U.S. debt to pay for the cost of their tax cuts to the ultra rich. We can’t let them get away with that.

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. 

Renzo Dougan Viscardi [image description: A man with light skin, dark curly hair, beard and mustache wears a grey hoodie. He poses in a living room, with four guitars of different styles mounted on a white wall behind him.]

Renzo is 38 and living what some might call an enviable life. Entering his home, you’d quickly realize his passion for the guitar; several are displayed on his wall. You’d also learn, from the memorabilia and the books on his shelves, that he has a thing for the Beatles, Bob Dylan, and the Grateful Dead. He landed his dream job at Martin Guitar nearly twenty years ago, so he knows many of the local musicians. 

Sometimes it seems that everyone in town knows Renzo. His warm smile draws people to him, whether he’s at the gym, the pool, horseback riding, taking classes at our community college, or fishing. His great sense of humor makes him a welcome guest at our neighborhood gatherings. Even the poll workers know him by name, as he shows up to vote at most elections.

Renzo has come a long way since surviving a sudden cardiac arrest with a subsequent anoxic brain injury at age 14. He had been participating in the Presidential Fitness Test during gym class. Renzo was medevaced to a specialty hospital an hour away, where he remained in a coma for the next month. The doctors told us he would likely remain in a "persistent vegetative state." How dehumanizing! The preferred medical term, since around 2010, has been “unresponsive wakefulness syndrome.”

Renzo’s father, Tony, was granted medical leave from his professorship, and I suspended work on my MFA. We stayed by Renzo’s side over the next three months, spent in three different hospitals. We taught him to breathe again without assistance, and his tracheal tube was removed before he was discharged home. Our dining room was transformed with a hospital bed and an array of medical equipment. Renzo could no longer walk, talk, eat, or control his bodily functions. 

Renzo and Cheryl [image description: A man and woman, both with light skin, wearing blue clothing, pose outside in front of a green hedge and a grey fence. The man is seated in a wheelchair and the woman is standing.]

At first, insurance provided only eight hours of nursing per night, ostensibly so Tony and I could sleep. We were left to attend to Renzo’s countless daily needs. It was physically and emotionally draining. We would not have survived, if not for our community who rallied to support our every need. They even delivered meals for the next year, allowing us time to focus on Renzo’s immediate needs.

When Tony returned to work, Renzo’s care became my full-time job. I struggled to make sense of the fragmented service systems our son’s future depended on. I was relieved to learn Renzo would receive school-based services, including physical, occupational, and speech therapies. These services made all the difference in Renzo’s recovery efforts. When he turned 21, he began receiving Home and Community-Based Services (HCBS) through Medicaid, which provide supports for his right to live in his community, which is less costly than living in an institution. 

Tony and I continue to help Renzo with as many of his needs as we can. His life-long security, however, depends upon Medicaid’s HCBS waivers, which pay for his Direct Support Professionals (DSPs). DSPs assist him round-the-clock with his medications, and with all activities of daily living. They learn the nuances of Renzo’s communication, his physical and emotional needs, and they help him communicate with his doctors, therapists, co-workers, and people in his community.

Renzo [image description: A closeup of a smiling man with light skin and dark curly hair. He sports a closely trimmed mustache and beard. He wears a grey shirt under a blue and white checked shirt.]

We were all devastated when one of Renzo’s most reliable and compassionate direct support workers told us he could no longer afford to work with him. He was making barely enough to rent a room in someone’s house and to make his car payments. When Renzo loses a valued DSP, his smile doesn’t come as easily, and his body language changes. Someone he viewed as a friend is suddenly gone, and he must entrust yet another stranger with his care.    

So many DSPs are being forced to leave this meaningful and essential work for higher-paid menial work in distribution warehouses, fast-food restaurants, etc. Who will be left to care for Renzo when we die?

Today, the median wage for home care workers nationwide is only $12 per hour. Over half of our nation’s DSPs rely on government-funded benefits, and most DSPs work two or three jobs in order to make ends meet. Among this workforce, 37% are uninsured and another 21% rely on public insurance like Medicaid. According to a study from the Economic Policy Institute, it would actually save taxpayer dollars were we to provide DSPs a living wage. DSPs are so much more than “caregivers;” they are a lifeline.

Our family has faced many fears and worked hard to assure Renzo’s quality of life, fulfillment of his potential, and his place in our community. We’ve learned much about resilience and the importance of government programs, not only as a safety net, but also as an investment in our citizens with disabilities and those who support them. It is imperative that our nation invests more state and federal funds in HCBS.

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Cheryl Dougan, a parent activist, has worked for change in the way people with disabilities are served since 1998. She is committed to the principles of Self-Determination and Person-Centered Thinking, both key to mapping a meaningful future for Renzo. Cheryl has served on the boards of several state and national disability related organizations, including the National Alliance for Direct Support Professionals, and is active in ongoing system transformation work with the Pennsylvania Office of Developmental Programs. She has presented at numerous state and national conferences. Cheryl lives in Bethlehem, PA with her husband Anthony Viscardi. Their son, Renzo, lives right around the corner in his own house, where he is supported by a remarkable team of Direct Support Professionals.

Renzo Dougan Viscardi is a creative individual with a broad range of interests including music of the sixties, art, and travel. He enjoys horseback riding, water activities, concerts, movies, children, good friends, strumming guitar, and Italy. Renzo did clerical work at Martin Guitar Company from 2002 until 2020, the beginning of Covid, and volunteered for fourteen years with the Easter Seals pre-school program. He received the 2004 Volunteer Center of the Lehigh Valley Award for Outstanding and Dedicated Service to the Community and the 2013 Vocational Achievement, presented by the Intellectual Disability Awareness Steering Committee of Lehigh & Northampton Counties. Renzo is an exhibiting artist working in mosaic, collage, and acrylic paint. Renzo served on the Northampton County MH/EI/DP Advisory Board (Nov 2010 to Jan 2013).

Little Lobbyist Simon Hatcher poses in front of the U.S. Supreme Court steps with his dog. [image description: A light-skinned disabled boy poses in his wheelchair in front of the white marble steps of the U.S. Supreme Court. The Court’s Corinthian columns and can be seen in the background. The boy holds the leash of his dog, a large curly white-haired breed whose long pink tongue is sticking out.]

The Senate and the U.S. House of Representatives have voted to allow legislators to begin drafting President Biden’s $3.5 trillion “human infrastructure” package through budget reconciliation. 

The Biden Administration has asked for $400 billion for Home and Community-Based Services (HCBS), which are part of the federal Medicaid program, to be included in the $3.5 trillion final package. To this end, Senator Casey and Representative Dingell introduced the Better Care Better Jobs Act, which designates funding to reduce or eliminate waiting lists for HCBS, increase wages for home health aides and direct support professionals, and allow hundreds of thousands of children and adults with disabilities to live where they choose — outside of institutions. 

Home and Community Based Services, known as HCBS, are skilled supports – aides, home health care, and skilled nursing services, etc. — that enable disabled people to live in their own homes and communities, contributing their talents and skills, working, volunteering, and learning. HCBS provide the human infrastructure for disabled children and adults, and their non-disabled family members, to be fully included as citizens, just as roads, bridges, airports and public transportation help people connect, get to work, travel for business and pleasure, and allow goods to be delivered across the country. 

HCBS is a critical part of  Medicaid, but it can be difficult to obtain and is not available to everyone who needs it. There are currently over 800,000 people on decades-long waiting lists for HCBS, and far more people qualify who aren’t even on waiting lists yet. What’s more – people who qualify are guaranteed care in an institutional setting, but not in their own homes – which is far less expensive and what most would prefer.

So, what’s the problem? What’s the history here?

Medicaid 101

Medicaid was established by President Lyndon Baines Johnson (LBJ) in the Social Security Act of 1965, part of his Great Society initiative, perhaps the greatest human infrastructure achievement of the 20th century. Medicaid was created to provide health insurance and services to the poor, elderly, and/or disabled. The 1965 law also entitled people who needed 24/7, or nursing-level, care to receive that care in an institutional setting without a waiting period. This is frequently referred to as Medicaid’s “institutional bias.”

Disability activists Mia Ives-Rublee (center, Director of the Disability Justice Initiative at the Center for American Progress) and Elena Hung (right, Co-Founder of Little Lobbyists), two young disability activists, and two dogs in front of the U.S. Supreme Court. [image description: Left to right are seated on the pavement a large white curly-haired dog, a light-skinned boy with glasses, a large white short-haired dog, a light-tan skinned woman with short black hair, a light tan-skinned young girl with black pony tails, and a light-tan skinned woman with black hair pulled back. In the background is the facade of the U.S. Supreme Court.]

But, as we know, nursing homes and other facilities cannot duplicate the love and support of friends and families, nor opportunities for growth, education, and community engagement. The Covid-19 pandemic has also shown us how dangerous institutional care really is, a point disability activists have been making for decades. Home care is also less expensive than facility care. 

Until 1983, Medicaid did not provide in-home care. Throughout the 1950s, ‘60s, and ‘70s, disability and parent activists fought for the rights of disabled people to live in their communities. The independent living movement was founded by Ed Roberts, and Judy Heumann fought for the implementation of Section 504’s antidiscrimination provisions. The Arc of the United States was founded by parents to help keep children with intellectual and developmental disabilities at home. 

A tipping point came in 1981, when the story of Katie Beckett came to the attention of President Ronald Reagan. Katie was a 3 year old girl who had developed disabilities after a brain infection. She was forced to live in a hospital for three years because she needed a ventilator and Medicaid would not pay for her care to be provided at home. 

President Reagan was moved to act, and with the support of the president, the disability rights movement was able to make progress toward providing home care for medically complex persons with disabilities. In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. For dependent children with disabilities, family income could also be waived. Congress considered these “waivers” to be demonstrations, meaning states could develop their own programs to do what worked for them.

The result is our contemporary suite of Home and Community-Based Services programs, part of Medicaid’s state-federal partnership. All states now have some form of a “Katie Beckett waiver,” which allows medically complex infants and children to be cared for in their homes. Many states also have Autism waivers, some have a waivers specific to people with rare and expensive medical conditions, and others have general developmental disability waivers. Each state is allowed to limit how many people can receive services and to establish waiting lists for services. 

Because of this variability from state-to-state, Medicaid waivers for HCBS have a patchwork quality. Who’s eligible for services depends on where you live, and if you move between states, you lose your services and have to reapply. 

The result is that American citizens with disabilities have the right to funds for health care in an institution, but NOT to receive funding for health care in their own home.

Home and Community Based Services are a Civil Right

With the passage of the Americans with Disabilities Act (ADA) in 1990, and the 1999 U.S. Supreme Court Olmstead Decision, the disability community achieved clarity: living in the community of your choice is a civil right. 

Yet decades later, this civil right is still not attainable for hundreds of thousands of people with disabilities, and disability rights advocates continue to fight to expand and improve access to HCBS. States balk at the “cost” of transitioning disabled people out of institutions and into their communities as they continue to operate under the false assumption that institutional care is “cost-effective.” States can still shirk the Olmstead Decision by claiming they don’t have enough money to let everyone who wants to live in the community of their choice. 

Caregiving IS Infrastructure

Nine young Little Lobbyists pose on a tree-lined Washington D.C. street with the U.S. Capitol building in the background. [image description: Nine young children with various skin tones pose on a city street with varying shades of pavement (grey, dark red, tan). Some of the children are in adaptive strollers with medical equipment, others stand. They are all goofing off, adorably.]

This is why the disability community, our families, friends and non-disabled allies need Congress to pass the Better Care Better Jobs Act to provide full funding for HCBS. We need to eliminate waiting lists, establish new state programs, and fulfill the integration mandate of the ADA. 

We need states to understand how critical it is to support families in their own homes and communities. The Better Care Better Jobs Act will create 516,000 new good paying care jobs to bolster the caregiving workforce, which is currently in crisis due to our country’s rapidly aging population and the ravages of the pandemic. It will also allow more than 1.1 million unpaid family caregivers to return to the workforce, dramatically reducing the financial impact of caregiving on families.

Most of all, we need to demonstrate that it is entirely possible for LL of us to survive and thrive outside the walls of institutions; contributing our skills, talents, and tax dollars to America.

We are the face of human infrastructure, and we are deserving.

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer. Laura LeBrun Hatcher is the Design and Communications Director of Little Lobbyists, a creative consultant and design educator.

Mallorie and her family. [image description: A family, including a mom, a young boy and a young girl, pose in front of a rustic photographer’s backdrop that includes hewn logs. The family wears coordinating navy blue and white plaid button-down shirts. The family dog, a large white curly-fur breed, poses with them.]

An Open Letter to the Centers for Medicare & Medicaid Services (CMS): 

My name is Mallorie Hatcher from Johnson City, Tennessee. I work full-time as an occupational therapist. I am the proud parent of a nine-year-old daughter, Londyn, and a seven-year-old son, Nolan. As a member of Little Lobbyists, I am writing today to speak on behalf of my son Nolan and all children with complex medical needs and disabilities.

Nolan started first grade this year. He loves dirt bikes, music, vacuum cleaners, and choo choo trains. Nolan has a microduplication on his 17th chromosome. It is classified as a rare chromosome disorder. If you saw him you would assume he is much younger than he is due to his slow growth. 

Nolan has feeding difficulties (requiring supplemental nutrition through his feeding tube), global learning delays, Chiari malformation (requiring yearly MRIs and possible future neurosurgery), and epilepsy (requiring daily medication). He has had multiple hospitalizations and surgeries during his life. He has more than a handful of specialty physicians, and regular speech and occupational therapy sessions in order to help him best thrive. 

Tennessee has a history of being a low-tax and underserved state. For instance, my son Nolan, despite having complex medical needs and disabilities, has never been eligible for any form of Medicaid in the state of Tennessee. In fact, our state falls far under the national average in terms of coverage for individuals with disabilities. Our family, like many others, has been fully dependent on private employer insurance for my son’s care. Medically necessary services like therapy, specialized formulas, and medical equipment are not covered. This in addition to already high deductible and out-of-pocket expenses has put our family in significant medical debt. 

Starting in 2019, our family had the opportunity to advocate at the state level to get a much needed bill passed in our state. I took my children to meet our state legislators, wrote emails, and engaged the public. My family courageously came together with the Tennessee Disability Coalition, the Tennessee Justice Center, and other families and groups, all working to get the Katie Beckett waiver passed in Tennessee, which is specific for children with complex medical needs and disabilities. I no longer felt alone, and families like my own felt heard and supported. We felt as if our leaders were beginning to understand the reality and shortcomings of our state when a family cares for a child with complex medical needs and disabilities. 

Mallorie, at left, poses with other members of Little Lobbyists Tennessee chapter. From left to right, Mallorie, Jessica Fox, Michelle Gross, and Asher. The group spoke at a town hall for Stop the Block. [image description: Three moms wearing grey and teal Little Lobbyists t-shirts pose with a young disabled girl who wears a pink Little Lobbyists t-shirt. One mom holds a framed photo of her daughter. They are in a conference room.]

When learning of Amendment 42 to fund Tennessee’s Medicaid program entirely through a block grant, we felt betrayed. While legislators say that the amendment will not impact the Katie Beckett Waiver for its first three years, Medicaid block grants are historically devastating for individuals with disabilities. For example, prescription medications could be limited, and other caps could be placed on medical care. Block grants will likely limit the number of children ultimately served in the future of the program. In a state that is historically not known for taking care of individuals with disabilities, it is scary to lose federal protections for our children and others with complex medical needs and disabilities. As Little Lobbyists, we advocate for all.

We are scared once again, but we have hope that we will once again be able to come to an understanding that Medicaid is a life saving program (not an experiment) and that our children's lives matter. Along with the Tennessee Justice Center, our families continue to speak out against the use of block grants in Tennessee, and are hopeful that the Centers for Medicare & Medicaid Services under the Biden Administration may yet overturn Tennessee’s decision. I feel reassured that the Biden administration has prioritized healthcare and disability rights. I hope we are able to work together  and put a ban on unethical Medicaid block grants. 

My son has a genetic condition: he will not outgrow this. The reality is that my son will one day grow up to be an adult with a disability. His life will depend on his access to life-saving medical care to survive and thrive to his best potential. 

Access to healthcare should be a human right, not a privilege. A price tag should not be put on any life. My story only gives a small glimpse into why this is a bad idea. Allowing block grants in a state that is already highly underserved is a recipe for disaster and could result in rationing of care among its most vulnerable residents. 

Bottom Line: This is a harmful proposal that cannot be fixed. It goes against the goals and purpose of the Medicaid program. I respectfully urge you not to go forward with this harmful proposal.

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Mallorie Hatcher is a member of Little Lobbyists who worked to get a Katie Beckett Medicaid waiver passed in Tennessee where she lives with her family.

Bob Williams seated in his wheelchair, which has a mount supporting his communication device. Bob is a white man wearing a white suit jacket with a pink striped shirt and a bowtie.

As far back as I can remember, I have always found ways to express myself that others can understand. It is why I escaped the discrimination others still endure.  

I have significant motoric, and speech, disabilities due to cerebral palsy. On the wall of my office hangs a piece of wood with the alphabet and numbers zero through nine stenciled in black. It is there as a reminder of both the journey I have been on over the past 63 years and the large debt I am paying forward.  

I believe my life, while molded by many factors, has been possible by the love and belief that my family and others have had in me. From a young age, I had a ready supply of ways to communicate and connect. My Mom said that she knew I could keep a beat and had things to say when I pretended to lead a band or played 20 questions, beginning as a toddler. At six or seven, I learned to type on an IBM electric typewriter, which convinced my doubtful teacher that I could both read and write.

When I was about 15, my camp counselor painted the alphabet in bold black capital letters on that piece of wood hanging on my wall. I pointed to the letters to spell out words and sentences. A year or two later that same camp counselor handed me a green board that had letters, numbers, words, and phrases on it. It was called the Hall Roe Communication Board, named for the man with cerebral palsy who helped design it, and it saw me through high school, college, dating, internships, and my first two full-time jobs. In fact, I used that board to lobby with others to gain passage of the Americans with Disabilities Act (ADA).  

Bob’s first communication board: a piece of brown wood handprinted with the alphabet in capital letters and the numerals 0 through 9.

Just after the ADA became law, I participated in the Augmentative Communication, Empowerment, and Supports (ACES) Institute at Temple University in Philadelphia. There with about a dozen other people who used AAC, I learned to use my first speech generating device. I have been using successive iterations of this same device throughout my life.  After that my life and career took off in directions even I had never before fathomed possible.  

ADA AND THE RIGHT TO COMMUNITY 

For me, the penultimate purpose of the ADA is best summed up in four words: The right to community. I want to be clear; I did not say “the” community. I said, the right to community: To be a part of, not apart from, life.  

Congressman John Lewis’ last words to America, printed in The New York Times on the day of his funeral, were these: “Democracy is not a state. It is an act.” I believe he meant democracy is not just some fancy-sounding noun we use. Not something we should dare take for granted. Rather, it is a verb--the action we all must engage in known as E. Pluribus Unum, each doing of our individual and collective parts to create and nurture. One out of many. 

I believe the same is true of community. Community is not merely a place on a map. It is an act that we all must engage in and take responsibility for, together. It is the action of communicating, connecting, and being in community with each other. 

I often ask all kinds of people what they see the purpose of the ADA as being. Predictably, they say that it is to eliminate the architectural and other design barriers many of us encounter. I reply this is true as far as it goes. But I then point out that the fundamental aim of the law is to continually chip away at and to eradicate the pernicious, deeply entrenched biases that are the root reasons for these barriers, as well as other forms of discrimination, including speech discrimination. 

Progress clearly is being made, but far more work remains to be done. Thirty years ago, when many of us were working on the passage of the ADA, we referred to accessible transportation as the linchpin of community integration.  

Today, effective communication is that linchpin. Absent that, there is no community, there is no real integration. Where we live is critical, but merely being present is not sufficient. Absent the opportunity, tools, and strategies we need to communicate, connect, and live with each other, as part of one another, we are all forced to live separate and apart from each other. 

A Hall Roe Communication Board. Image of a board with a blue background covered in sections of black type that include commonly used words and phrases, as well an as alphabet.

SPEECH DISCRIMINATION

To this day, there is no question that children and adults who cannot use our own natural speech to effectively express ourselves continue to experience higher risk of unjustified institutionalization, segregation, and isolation; abuse and violence; widely disparate education, employment, and health outcomes; and the routine violation of our liberties, the power to express ourselves, and to decide how we live our lives. 

The ADA offers two sets of requirements that I strongly believe we must increasingly leverage to challenge and put an end to it. The first of these is the right to effectively communicate. The ADA requires that people with disabilities that impact their ability to communicate (whether expressively, receptively, or both) must be afforded the opportunity, tools, and supports necessary, in the words of the Justice Department, “to equally and effectively communicate with others.” 

The second set of safeguards are those commonly referred to as the “integration mandate” of the ADA and affirmed in the Olmstead decision, which require that people with disabilities not be institutionalized, segregated, or otherwise isolated, and that they must be afforded the opportunities and supports to take part in every facet of the American community.  

For too long, far too many children, working age persons, and older adults who need, but lack access to augmentative and alternative communication strategies and related supports have been isolated and excluded from much of life. I believe we can and must shatter the injustice of silence by using both sets of these protections to advance and secure a true right to community. 

Communication is never a one-way street. Community is not an island that we exile someone to and declare they are integrated. For too long, we have placed the onus for communicating solely on the person with the greatest challenges. I have seen, as I am certain you have, how this has played out in the lives of many folks with intellectual and developmental disabilities, who I have known, loved, and learned the most from. We must expose and end this most endemic and devastating bias. As Anne McDonald, who spent most of her life on the back ward of an institution in Australia, wrote, there is no way for someone that is speechless and trapped to connect and communicate if others do not help them to make that leap. The ADA, in my view, must become the powerful launching pad that enables us to make that great leap, together. 

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Image of the Communication FIRST logo, blue and green speech bubble icons intersecting. The intersection is black with white lines that symbolize text.

Bob Williams is the Policy Director of Communication FIRST, and has advanced the rights, opportunities, and supports for children, working age persons, and older adults with significant disabilities for over 40 years, including creating community living services in DC, helping to pass the  ADA, and administering the federally funded developmental disabilities and independent living networks. 

Rob Stone, now 23 years old, supporting Little Lobbyists & showing off all his advocacy pins

As the mother of a young man with complex medical needs and disabilities, health care means peace of mind: knowing that Rob’s medical and adaptive needs will be met. That Rob can take advantage of technology and medical advances, such as his augmentative and alternative communication (AAC) device. Rob’s Tobii EyeMobile gives him the ability to speak for himself, and he has a lot to say!

Access to quality health care hasn’t been easy for our family. Protecting Rob’s health took us on a 14-year odyssey through seven different private insurers, to the Affordable Care Act (ACA), to, finally, a Medicaid waiver. We learned the hard way that our country’s health care system is too byzantine, too fragmented, and it must be fixed. 

What else does health care mean to me? That one day soon, our protracted civil war over the right to health care will be over. That all of us will have equal access to technology and medical advances. Protecting the ACA is an important first step toward health care for all. 

The U.S. Supreme Court will hear oral arguments November 10 on the Trump Administration’s challenge to the ACA, a case that will decide its fate. We must hope SCOTUS recognizes health care as a necessity, not a choice. This case is the decade-long culmination of Republican efforts to undermine our health care, offering no plan to replace it other than a nebulous idea that the right “to choose” will give us health care--as if doctors treated patients with rainbows and lollipops. 

Acknowledging that health care for all is 100% necessary shouldn’t be this hard, but we live in a society of massive contradictions: If I could make a Venn diagram of conservative positions related to healthcare and "liberty," I’d find significant overlap among persons who claim to act from a religious imperative, deplore abortion, but are quite willing to endorse the use of the verb "to choose,” as in, "I should be able to choose not to buy health insurance," as though that statement has any connection with reality or responsibility, personal or otherwise. 

Choosing not to have health care is an act of gross societal negligence. By choosing not to, you demand that other people shoulder the bills you will inevitably incur when you require (at a minimum) emergency room care, unless you carry a card in your wallet that says you prefer to bleed out on the macadam after your car accident. We must all chip in, as well as support those who cannot afford to do so. 

Especially now, during a pandemic, our health depends on the health of those around us. Yet Republican leadership is still trying to convince us that health care is not a right, but an undeserved entitlement. We don’t have a right to remain healthy, but we do have a right to be sick and stay sick? Even die? Is that why Republicans want to overturn the ACA? Because the ACA takes away our right to “choose” poor health?

Make no mistake about it: Health care is a human right. Medical research and technology is the moon race of this century. Whenever I sit down with doctors or durable medical equipment vendors or pharmacists, I'm stunned by the sheer ingenuity of this country. For those who hunger and thirst for adaptations and answers to their medical problems, let alone righteousness, there's someone out there who's spent their working years thinking about your problems and how to solve them. All persons need access to these advances --despite cost issues--and we must dedicate ourselves to ensuring that access.

We must elect politicians who realize that critical investment must be made in health infrastructure, that health care is part of our larger, job-creating economy, and that we must give all citizens equal access to medical care. If we start from the perspective of cost, assuming that our collective resources are puny (they're not), we'll never get anywhere. If we point fingers of blame, we'll just self-destruct. We have to start from the perspective of humanitarian investment and what this investment will yield for our country, its citizens, and the world.

In the days leading up to the most consequential election in our history, ask yourself this: Have we become a country that looks to the future, or a nation of Hobbits, content to spend our lives by our own home fires, looking at the past? What happened to us? And, more importantly, what will happen to us?

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Jeneva Stone is the blog manager of Little Lobbyists, and Rob’s mom.

Last week, Little Lobbyists families were invited to participate in a Senate press conference opposing President Trump’s proposed budget cuts to Medicaid. Following Senators Schumer, Murray, Stabenow, and Wyden, Little Lobbyists member Cristina Perez Edmunds (with her son Oscar by her side) delivered an unforgettable reminder of the power of Medicaid: 

My name is Cristina Perez Edmunds, and it is an honor to speak here today. I am a proud first generation American daughter of a Cuban refugee, and proud mother to my beautiful son, Oscar. Oscar is a strong, happy, beautiful boy, with big brown eyes. He’s about to turn four. He loves books and bath time and has amazing hair. Oscar was born with an extremely rare chromosomal deletion — there is only one other person in the world with the exact same missing genetic material. Because of this diagnosis, Oscar lives with stage three kidney disease, heart disease, and brain differences which have required endless testing, appointments, and even surgeries. He requires a feeding tube for nutrition, as he has trouble swallowing, and is a wheelchair user — although he works extremely hard to gain mobility skills in his many therapy appointments. 

Oscar was born prematurely, and his father and I thought he just needed some time to catch up. Unfortunately, it became clear that we had a much longer road ahead of us than we had anticipated. As parents, our ultimate goal is to raise a son who is independent, and any milestone toward that is cause for huge celebration. 

I want you to think of your own children, asleep at night in their cribs or beds. Perhaps the temperature has dropped in the house, and their blanket has made its way to the other side of the bed. I’d imagine your child might wake up, grab their blanket, get themselves cozy, and fall back asleep. Or perhaps, they’d walk to your room, and say, “Mommy, Daddy, I’m cold, can you come tuck me in?” This is a privilege that many of us parents of medically complex children do not take for granted. 

My child does not speak and does not have independent mobility. He cannot walk to our room in the middle of the night to tell us if he’s cold, or uncomfortable, or having a bad dream. It has taken four years of intensive therapies to get to where we are now. It was a year before Oskie could sit on his own, two years before he could say “momma” and “dada,” three years before he figured out how to move forward in his walker, and, this year, he learned how to scoot forward. 

The opportunity to learn these things comes at a hefty price. An initial consultation for therapy is $500. That’s just for someone to watch him for an hour and discern what he needs from therapy. Each session after that costs about $150 two to three times per week, all year round. The wheelchair he uses costs $6,000, and the gait trainer he has at home is another $4,000. The gait trainer, until a few weeks ago, has been his ONLY mode of independent mobility. Add to that the cost of his formula, which must be administered via g-tube. Just to meet Oscar’s basic needs to eat and to learn how to move, our family is staring at a bill of approximately $30k per year. This total does not include doctor appointments, diapers, ER visits, and the surgeries that lie ahead.  

Thirty thousand dollars per year is someone’s salary. For many families like us, Medicaid is literally a lifesaver. Children like mine require full time caregiving — and may require that for the rest of their lives. This usually means one parent has to quit working, like I did, to care for their child full-time. Without Medicaid, families would have to choose between giving their child the opportunity for mobility or making rent; teaching their child how to speak, or fixing the roof; teaching their child how to eat, or fixing their car. 

Simply put, without Medicaid, families like ours would be bankrupt.

The other night, when we put Oscar to bed, he grabbed his blanket, pulled it over himself, rolled over, and fell asleep. He is able to do that, in a comfortable home, in a comfortable bed, because of Medicaid. 

Yesterday, President Trump released his new budget, including detrimental cuts to Medicaid. This will, without a doubt, reduce, or even eliminate, accessibility to the life-saving benefits that medically complex children, like mine, rely on to survive and thrive.

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Cristina Perez is a New Orleans-based singer and mother to three-year-old Oscar, her medically complex and disabled son. She is focused on using her original music to bring light, love, and awareness to her community and to give a louder voice to mothers of children with disabilities and rare diseases. Her latest single, “Lessons I’ve Learned” was released last year as an uplifting anthem for mothers to turn to when things get rough. Cristina also authors the blog “It’s Not Too Complicated,” where she breaks down the trials and tribulations of motherhood, marriage, and everyday life with a medically complex child.

Currently, Texas Governor Greg Abbott and Attorney General Ken Paxton are fighting to overturn the ACA. Governor Abbott, a pro-life politician, has said, “Texas has become the national leader in defending life. As governor, I will fight for every child to have a chance at life." But as I sit with my son Raphael, who has complex medical needs, I wonder—how is Texas defending life when it attempts to pull the ACA and Medicaid protections away from my son and many others like him?

I remember my pregnancy with Raphael: At five months pregnant, my husband and I are staring at a whiteboard. A world-class doctor has just finished writing our baby’s health issues on the board. He tells us it’s time to make a tough choice, and that if I were his daughter, he wouldn’t let my baby be born. We disagree—this baby is loved more than anything. We had tried for years to get pregnant, and had dreamed of the love we would show our baby. I dreamed of baby snuggles and laughs, and watching our child grow.

Fast forward eight months. My son, Raphael, has survived three months in the NICU, two surgeries, and countless medical procedures. We adjusted to life in the NICU, and I learned how to take care of my son’s medical needs. Every month on his “monthday” we would throw little NICU parties, complete with party hats and banners. Each night, we’d read him books and cuddle him to sleep. I learned infant massage and used oil to massage his tiny body.

We’d been home for a week when I woke up to see him lying limp and cold. In the scariest moments of my life, I performed CPR. Now I was at a different children’s hospital, in a trauma room, watching swarms of medical professionals surround my Raphael’s tiny, lifeless body as they worked to bring him back. The doctor told the team to work faster, that “this baby isn’t responding.” My heart nearly stopped—all I wanted was my son, alive.

For weeks after that horrible day, we sat by our son’s bedside, watching him slowly improve and stabilize. At this point, our medical bills (despite my excellent private health care plan) were skyrocketing—we received our first bill, for thousands of dollars, and panicked—how would we pay this on top of the hundreds of dollars we had been paying for weeks to park at the hospital?  When you are inpatient, everything is more expensive: food, gas to get to the hospital each day, and all of the specialists. Because my pregnancy had been so complicated, we had already spent all of our flexible spending account funds.

At some point in those hazy hospital days, a social worker helped us walk through the paperwork so our son would qualify for a Medicaid waiver—state-federal secondary insurance coverage expanded in our state as a result of the ACA to protect more little Texans with complex medical needs. Without the ACA and Medicaid, my son’s life and our livelihood would be at risk. Raphael needs monthly shipments of medical supplies and multiple therapy visits per week, which are covered by Medicaid. He gets sick easily, and when he does, he tends to get REALLY sick. Those additional health costs are covered. Medicaid provides home nursing that keeps Raphael healthy and allows my husband and I to work at jobs that matter to us and provide for our family.  

Raphael is now three. He loves playing soccer, going to swim class, and convincing his dad and me to take him to Chuck E. Cheese. He is supremely inquisitive (he’s teaching himself Spanish!) and incredibly loving; he adores his little sister and loves to shop with his shopping cart. Without Medicaid, Raphael would not be the thriving toddler he is today.

Both the ACA and Medicaid protect Raphael’s right to health care. Due to his complex medical needs, Raphael would not qualify for health insurance without the ACA’s guaranteed coverage of pre-existing conditions. Without the ACA and Medicaid, Raphael would have maxed out his lifetime health care cap long before his third birthday.

So, I sit with Raphael and wonder – how will he, and so many children like him, continue to survive and thrive if Governor Abbott and Attorney General Paxton succeed in taking away his health care rights? 

[image description: Mom Gillian with Raphael and his baby sister and dad seated together in front of a window]

 The following is a transcript of remarks  given at a Press Conference in the U.S. Capitol, hosted by members of the Senate and Protect Our Care, at the closing of Medicaid Awareness Month on April 30, 2019

I’m Jeneva Stone from Maryland and I’m a member of Little Lobbyists, a group of families advocating for children with complex medical needs and disabilities.

This is my son Rob. Rob recently graduated from high school, and he has plans to be an artist, writer and disability advocate. Rob enjoys baseball, movies and museums. He’s a huge Game of Thrones fan.

Rob also has a rare disease, and he’s one of 35 million Americans for whom Medicaid has been a lifesaver. Before Rob qualified for a Medicaid waiver in 2012, our family had been through 6 different private insurers—trying to avoid hitting annual and lifetime coverage caps—and over a quarter of a million dollars in out-of-pocket medical expenses.

Unlike private insurance, Medicaid is designed for people with disabilities: It provides all 30 boxes of medical supplies Rob needs every month. His specialty medications are covered. His therapies are covered.

I don’t have to fight with an insurance company to get Rob the customized wheelchair he needs, which retails for $8,000 to $10,000 without Medicaid.

Why does Rob need that wheelchair? So he can get out in his community, just like his peers—going to Orioles games and the movies, and even having a beer now that he’s old enough. Rob’s Medicaid coverage provides home nursing and personal attendants so he can live in his community, where he belongs, with supportive neighbors and friends.

Because of Medicaid, Rob can live at home with his family, rather than in a nursing home where no 21-year-old young man belongs. Rob’s sister will be home from college next month, and he’s looking forward to hanging out with her again.

Before Medicaid, medical bankruptcy was a real possibility for my family: Nothing prepares you for the staggering costs of raising a child with complex medical needs. Savings, family money, even selling your home cannot cover two decades worth of multiple specialists, medical equipment, prescriptions, hospitalizations and surgeries, therapies, home modifications, and home nursing.

Survive and thrive. That’s what Medicaid gave Rob, and that’s what Little Lobbyists wants for all children with complex medical needs and disabilities—the chance to grow up to be healthy adults. Rob, now 21 years old, is living proof of the power of Medicaid.

The author Jeneva and her son, Robert. 

Parents and family members of children with complex medical needs from across the country have sent us their stories. Stories of faith and hope, anger and tragedy. Stories that are written by parents in between daytime therapies and appointments, and those magic quiet hours between midnight tube feeds and 2am vent alarms. These stories that we have taken to Congressional offices can’t be boiled down to a representative few. Each and every child and family is different with different diagnoses and experiences but I felt it necessary to compile a few key quotes from these stories to illustrate what Medicaid is and what it means to these families.

Medicaid is one of the most frequented topics in the stories submitted to us. Parents have communicated to their Members of Congress through us the vital role that Medicaid plays in their lives and in the lives of their children. All of these parents have given permission to share their story here and I hope you will take some time to listen to them. Listen to their stories. See the worth in their children that they as parents see. And then call your members of Congress and tell them how vital Medicaid is to the families that need it.

Home Nursing Services

Home nursing services are vital to so many children who rely on Medicaid. Hillary and Ellen communicate this from experience to their Senators in New York:

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“Among other things, Medicaid has provided my daughter with overnight nursing so that I can sleep at night, knowing that she is as safe as she can be. Before nursing I was so exhausted from her care, lack of sleep, and fear that she'd have a seizure overnight and I'd find her not breathing in the morning, that I couldn't give her the best care possible day or night...let alone do anything beyond that.” - Hillary, mother of Esmé (6yo), from New York

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“Losing Medicaid would mean losing our nursing, which would mean I can no longer work outside the home - resulting in the loss of our private insurance.” -Ellen, mom of Owen (14yo), from New York

And also Sheila, even though she doesn’t currently have nursing for her son, feels as though she is doing the work of one:

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“I work as an unpaid nurse 24/7. It would take a PDN (making $20 or more an hour) to replace me. Going out and getting a job so I can get him off of Medicaid isn’t currently an option. We need Medicaid to remain available as it is for kids like Sam.” - Sheila, parent of Samuel (13yo), from Idaho

The Ability to Contribute to the Community

Nursing services comes up as often as Medicaid does in the parents’ stories and you will see further evidence of that in some of the following remarks. In the form of nursing and many other vital services, Medicaid gives these families and their children the ability to be successful, contributing members of society through gainful employment. Nicole from Maryland and Gillian from Texas share the importance of Medicaid support for their children in relation to continuing employment and successful careers:

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“My husband and I have good jobs and good private insurance. I have a professional degree and work as a lawyer. My husband works in management at one of the country's largest property management companies. We own our home, pay our taxes, contribute to economy as consumers, and generally work to be responsible citizens. We planned for years to achieve our professional and personal goals. What we did not plan for and could not have prevented was our son's medical condition. We did not plan to spend months in the hospital watching our baby fight for his life. We did not plan to face the choice of giving our son a tracheostomy or leaving him in a nursing facility to prevent his death. We did not plan the millions of dollars of surgeries, nursing care, tests, ambulance rides, hospital stays and medical equipment that he needs to stay alive and healthy. Everyone needs affordable health care and the option to enroll in Medicaid or a Medicaid waiver because as parents and as human beings we simply cannot plan for good health. Sometimes, the smallest, most innocent among us are born with the most fragile bodies. America should support a healthcare system that doesn't require bankruptcy to deal with unplanned health crises.” - Nicole, mother of Pierce (4yo), from Maryland

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“My husband and I are both public school employees. I am a high school principal, and he is a middle school assistant principal. Both of us have good insurance from our jobs. Without the ACA, Raphael would have maxed out his lifetime insurance cap during his first hospital stay. Thankfully, in November he qualified for Medicaid through a special waiver program. My insurance only covers 7 weeks of home nursing a year. Medicaid has allowed him to receive in home nursing, physical therapy, occupational therapy and speech therapy. Without this waiver program, we would have had to either have one parent quit our jobs or put Raphael in daycare and risk his health. I believe that Medicaid kept Raphael out of the hospital during his first cold and flu season. Medicaid has literally been a lifesaver for him.” - Gillian, mother of Raphael (1yo), from Texas

Being Able to Stay in Your Own Home

Many critics of Medicaid decry the cost labelling those who depend on it as a strain on society. But Elaine (North Carolina) and Susan (Illinois) outline how these services have allowed their children to stay at home preventing the need for their children to be forced into an institution which would cost the taxpayer much much more:

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“Medicaid's Home and Community Based Services and Supports (such as Medicaid waivers like CAP/C) allow people with disabilities to live at home, which is generally far less expensive than their living in an institution. Cutting these services will end up costing the government much more because Medicaid is the primary funding source for long term care, including nursing homes and other institutions.” - Elaine, mother of Lydia (5yo) and Carol (5yo), from North Carolina

“It is an unfortunate fact that some children who are medically complex pass away. We neglect to talk about how to best serve these children, who may or may not have access to comprehensive palliative care and hospice services through insurance, and rely on Medicaid to allow them to live at home. My daughter was one such child. Having Medicaid allowed her to stay at home on hospice for the last two years of her life, with home nursing care meeting her needs. Without these benefits, she would have had to be hospitalized for months or even years in the intensive care. Not only would this care be more expensive, but it would rob us as a family of those last precious moments we celebrated while she was in hospice. Medicaid provides critical services to children on hospice and children who are dying. We cannot forget these children and their families.” - Susan, mother of Karuna (passed away at age 11 in 2014), from Illinois

Financial Security

Overwhelmingly, the parents that submitted their child’s story to us talked about experiencing bankruptcy or extreme poverty if Medicaid services are cut or lessened:

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“Rowan spent a total of 286 days in the NICU and PICU. Without Medicaid/waiver programs, we would have gone into bankruptcy—which would have been a shame since we are small business owners who continually donate our services for others. Currently, her monthly supplies total more than $1000—and that's just what's covered by Medicaid. We pay an additional $500/month for the rest.” - Maggie, mother of Rowan (16 months old), from Georgia

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“I am extremely terrified. I am a waitress that makes $2.25 an hour. Without Medicaid I will not be able to pay for the medications, doctors, supplies, or home health care that Gunner needs to have in order to survive and thrive daily. Without these things my sweet boy WILL NOT LIVE!!!” - Carol, mommy of Gunner (3yo), from Kentucky

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“Cuts to Medicaid could be catastrophic for Jonathan and our family. We are a middle class family - we don't have a million dollars to pay for his care, to hire nurses, to buy medical equipment. Cuts to Medicaid likely will end up cutting his health benefits, and though we will do whatever we can to bridge the gap between what healthcare he needs and what healthcare he would get, we will likely go bankrupt trying, and I don't know that we will be able to get him what he needs, even then.” - Jessica, mother of Jonathan (3yo), from Massachusetts

Quality of Life

Finally, many parents, such as Shelly from Alaska, shared about the life and quality of life that Medicaid gives to their children. These life-sustaining services have played vital roles in these little lives:

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“Saved her life! Without Medicaid and services available, she wouldn't be able to speak or walk. Couldn't go to school or have friends and live with her adopted family who adores her. She would have died or been institutionalized (worse).” - Shelly, grandmother of Claire (9yo), from Alaska

I will leave you with this final quote from Marta, a Little Lobbyists mom who has joined us on the Hill multiple times with her daughter, Caroline. Here is just a little bit of her story:

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“Caroline didn’t start showing symptoms until after she turned 1 -- when she still wasn’t walking or even crawling yet. Then, around 14 months, she started choking on her food, she could no longer get her words out, and she struggled to hold on to her toys. My husband and I got the official diagnosis when she was 17 months old. We were stunned and completely devastated, but we promised her that we would give her a happy and full life no matter what. I never imagined that I would have a child who would depend on us for every aspect of daily living for the rest of her life. And I certainly never imagined I would have a child who would rely so much on a government program like Medicaid. But that’s the thing about life, everything can change in a second, and you never know when you or your loved one will have to turn to a program like Medicaid just to stay alive. Caroline and millions of kids like her who are disabled and chronically ill deserve a chance at life.” - Marta, mom of Caroline (7yo), from Virginia

Thank you to all of these parents and many more who submitted their stories to us to take to their Members of Congress. You all have helped us put a face on the need for a strong, robust Medicaid program in every state. To share your family's story with us, please visit our storytelling form by clicking here.