Little Lobbyists families outside Union Station before the rally. We are wearing our blue logo shirts with our name in white letters and the graphics of a child touching a shooting star, heart with an EKG line, and the American flag. Union Station’s gray granite walls and decorative pillars and light sconces are behind us. We are using a variety of mobility devices.

“The work you do matters. You are there for families when they need you most — providing comfort, strength, and compassion that inspire us all. Your devotion to the people and communities you serve represents the best of America’s character, and we will always stand with you, ensuring you are seen, valued, and rewarded fairly for the work you do.”

– President Joe Biden, Proclamation on Care Workers Recognition Month 

The White House proclaimed April National Care Workers Recognition Month. To celebrate, Little Lobbyists joined the Care Coalition for a week of events highlighting why Care Can’t Wait! It was an awesome week, and our Little Lobbyists families turned out to participate in every event:

• Rally for Care: The leaders of the Care Coalition, including Little Lobbyists’ Executive Director Elena Hung, made the case for care: “...support care champions who fight for HCBS, care champions who fight for our disabled children. Ask your friends and family to join us. We can do this. We have done it before, and we can do it again!” President Biden joined us, giving a rousing speech re-confirming his support, “Care workers represent the best of who we are in America. We look out for one another in America. We leave nobody behind.” 

• Congressional Town Hall on Care: Lawmakers, union representatives and the acting Secretary of Labor met with advocates and took questions. Little Lobbyists mom Jeneva Stone asked Senator Elizabeth Warren what she would say to those who tell us we can’t afford home care. Senator Warren gave a passionate response in which she emphasized that caregiving is part of our country’s infrastructure. She began by giving a  shout-out to our Little Lobbyists families, “who are there in every fight!”

• White House Care Convening: Key members of the Administration, including Secretary of Health & Human Services Xavier Becerra and the Director of the Domestic Policy Council Neera Tanden, detailed steps the Biden Administration has already taken to build a robust care infrastructure, and emphasized their commitment to do more. The leaders were joined by a diverse panel of caregivers and recipients, including an AAC user and family caregiver, who attested to the urgency of our nation’s worsening care crisis.

Care Can’t Wait is a national coalition committed to building a 21st century care infrastructure, including investments to expand access to childcare, paid family and medical leave, and home-and community-based services, and to ensure good jobs for the care workforce. Care Can’t Wait believes that “care is at the center of our families, communities, and economy.”

Little Lobbyists is a part of the Care Coalition, shining a spotlight on the needs of our kids: access to community-based long-term services and supports that keep our children in their homes and communities, where they belong; making policymakers aware that our kids with complex medical needs & disabilities require licensed and fairly compensated care workers,  including home nurses and other home care and direct support professionals; and advocating for the home care needs of disabled adults, because we want our disabled children to survive and THRIVE into adulthood. 

Enjoy this slideshow of our families in action! Visit our website! Follow us on social media (@LittleLobbyists on Facebook, Instagram, X, and Threads) and join our Facebook community page! Better yet, become part of our movement by sharing your child’s story with us!

Image descriptions will appear as the cursor hovers over the photo.

Isra'El & Rico pose outside Union Station. They wear gray suit jackets with LL pins on the lapel and LL t-shirts underneath. Both have close-cropped, tightly curled dark hair. Rico has a mustache.

Laura, who has long hair and sunglasses pushed up on top of her head, smiles outside Union Station. Kody is to her right.

Laura and Elena pose outside the station. Laura has a large red bag over her shoulder. Elena has bright magenta streaks in her dark hair.

Simon stands using his walker and points to something in the distance. Rob, who sits in his wheelchair, is to the left.

Kody, rolling along in his wheelchair, gives a thumbs-up as our group is escorted into the rally. Jeneva and Rob are behind him. Rob’s Medicaid nurse Ryan pushes his wheelchair.

Megan holds her son Gabe in her lap inside the rally. Both are wearing N95 masks and they are seated alongside a beautiful marble wall in earth tones.

Rob, wearing his light blue wheelchair cape and a matching LL baseball hat, smiles as he waits for the rally to begin.

Rico and Isra’El pose with Gabe in-between them. They are smiling.

Stephanie and Rob pose in their wheelchairs inside the ADA section at the rally.

Elena and her son Khalil wave from behind a metal barrier just outside the ADA section. Khalil is wearing an N95 mask.

Simon, wearing his headphones and glasses, gives the camera a knowing and pensive look as he waits for the rally to begin.

Danielle, who has elaborate cornrows and is wearing her Little Lobbyists royal blue shirt (as are all our members), holds her toddler daughter Destiny. They are looking at each other and smiling.

Destiny raises her arms high in joy. Behind her is the stage with a row of American flags.

Dan and his daughter Claire are seated at the rally, talking to Jeneva, who wears an off-white coat and has her back to the camera.

Elena speaks from the stage at the rally. To each side of her are other speakers.

President Biden walks toward a group of caregivers to the right. They hold signs expressing support for care. Among them is Jamie, who has long, dark curly hair. Behind them is a large sign on the stage, royal blue with white lettering: Care Can’t Wait.

Gabe and Destiny pose in front of the stage, which is all in blue and white with American flags.

A group of us pose in front of the stage—some are using mobility devices, some are standing, some are kneeling on the floor.

Laura and Jeneva pose on either side of Rob, who is smiling broadly from his wheelchair and wearing his LL baseball hat and his Clark-Kent-style glasses.

Megan and her young son Gabe pose in front of the stage.

Rico and Isra’El pose in front of the stage, looking sharp and serious!

Jamie, her daughter Claire (who uses an adapted stroller) and son Ben pose in front of the stage, with Izzy, a careworker for the late Day Barkan.

Another group of Little Lobbyists families poses in front of the stage, some standing, some using mobility devices. Danielle’s daughter Autumn holds a sign that says “Care Can’t Wait.”

At the Congressional Town Hall, Rob smiles at Destiny, who is being held in Danielle’s arms. Destiny is giving Rob the once-over. They are in a large conference room with banks of rectangular overhead lights.

Senator Bernie Sanders, wearing a suit and with his trademark wild white hair, speaks energetically into a microphone at the Town Hall to a tightly packed audience who sit on folding chairs.

Jeneva holds a microphone, with Rob next to her in his wheelchair, in 3/4 view of their backs. She is asking a question of Senator Elizabeth Warren, who wears a red suit jacket and is seated next to Senator Bob Casey and the host Sarah Jones.

Our Little Lobbyists families pose in front of the Town Hall backdrop, white with the blue logo of the Care Coalition and various slogans about care. Rob is posed in his wheelchair at the front. From l to r: Danielle holding Destiny, Daya, Elena, Jeneva, Val, Aire.

Rob poses solo in front of the Town Hall backdrop. He is smiling and holding the grip switches for his communication device.

Secretary of Health and Human Services, Xavier Becerra speaks from a podium in an elaborately decorated 19th century meeting room in the Old Executive Office Building, which is adjacent to the White House. Behind him is a large bronze wall decoration framed in ochre marble that features an angel holding tablets above a large shell, and a set of old-fashioned globe-style lamps above everything.

Rob poses in-between advocates Carson Covey (a fellow wheelchair- and AAC-user) and Carson’s sister Brynne. Behind them are two American flags flanking a decorative bronze doorway.

Rob and Jeneva pose outside the White House, under a white arrival canopy with the presidential seal.

A teenage girl sits in her adapted stroller. She is in an airport, the windows behind her showing blue sky and a boarding chute. A sign in front of her gives instructions for carry-on luggage.

The U.S. Department of Transportation has proposed new regulations that, if adopted, will grant a number of new rights for to disabled passengers on airlines, particularly those who use wheelchairs. These changes are long overdue. Your voice is important! The public comment period ends on April 27.

Our disabled loved ones deserve to fly with dignity and safety. Too often, wheelchairs are damaged or even lost by airlines. Too often, airlines do not give disabled passengers enough information on wheelchair accommodations on planes and assistance with boarding.

U.S. Transportation Secretary Pete Buttigieg wants to change that. If adopted, these new regulations would give disabled passengers the following rights to:

• Choose their own provider to repair or replace wheelchairs that have been mishandled by the airport or airline; 

• Ensure the prompt return of delayed wheelchairs; 

• Receive prompt assistance when disembarking; 

• Have their wheelchair waiting near the airplane’s exit door; 

• Be notified immediately if their wheelchair does not fit on an aircraft;

• Require annual training for airline employees and contractors who physically assist passengers with mobility disabilities and those who handle passengers’ wheelchairs; and 

• Make it easier for the Department of Transportation to fine airlines that violate the rights of disabled passengers.

Make your voice heard! Submitting comments only takes a couple of minutes. Click here to voice your support for these regulations. If you or a loved one has experienced difficulty flying, share your story about what would make flying a safer and more dignified experience for you.

If you think the regulations should go further, such as by requiring accessible bathrooms on planes or adult changing tables in airport bathrooms, share that as well.

Learn more about the proposed regulations in this story I wrote for AFAR magazine. Submit your comments no later than April 27th!

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Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate.

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!

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.

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. 

Sierra as a child during a hospitalization. [image description: A young white girl with short black curly hair stands holding onto an IV pole mounted with various medical devices. She wears a black pajama shirt and pink patterned pajama bottoms.]

“Fortunately, your daughter will still be eligible for a kidney transplant even though she has developmental disabilities,” the doctor said.

I sat there stunned. It had never occurred to me that my daughter’s intellectual disabilities could be a reason to deny her the lifesaving kidney transplant she needed.

Sierra was nicknamed “The Mayor” at her middle school because my tiny daughter has a big personality and always knows what should be happening and who should be where, and is not shy about sharing that information. She confounds doctors who review her medical records and labs and, based on that, expect to see a very sick girl when they walk into the room and instead find this energetic person who is living large and loving life. 

My spunky, loving, sweet daughter Sierra was born with a rare genetic condition called cystinosis which causes progressive damage to organs and tissue throughout her body. Only 500 people in the United States have cystinosis. After presenting with failure to thrive as an infant and seeing numerous specialists and undergoing every diagnostic test you can imagine, she was diagnosed with cystinosis, developmental disabilities, and verbal apraxia which means she has difficulty forming words. Cystinosis eventually leads to kidney failure, and Sierra’s kidneys began to fail when she was about four years old. 

People diagnosed with cystinosis did not usually survive beyond age 10 before kidney transplants became possible. Kidney transplants were a game changer for the cystinosis community, meaning children had a future. Not just a future, but a bright future in which they could have a good quality of life and live a more typical life span. 

As our family struggled to digest and adapt to the reality of our beloved Sierra having this chronic disease, we were mortified, terrified, sickened, and angry at the thought that her intellectual disabilities would ever be used as a reason to deny her any type of medical care, especially a lifesaving organ transplant. 

Sierra today. [image description: A young white woman with long curly blonde hair is seated outdoors. She wears a scoop-neck burgundy top and a burgundy and black checked skirt.]

Sierra, who is now 25 years old, loves to sing and dance, attend concerts, take care of people, volunteer in the community, and gives the best hugs, has survived cystinosis, a kidney transplant at age 6, lymphoma at age 10, a second round of kidney failure caused by the cancer treatment, a year of dialysis, heart failure, a second kidney transplant at age 12, and most recently, a stroke. Yet she comes through it all and continues to carry a spark that ignites joy in everyone she meets. Sierra is love on legs. 

Our family got lucky in that we have been working with an institution that did not include developmental and intellectual disabilities as part of their criteria to determine who would and would not be eligible for organ donation. 

But it shouldn’t be about luck. Sierra’s worth should not be measured by her IQ. She is invaluable.

We need to make sure all the Sierras out there are protected and able to get the organ transplants they need to preserve their valuable and precious lives. U.S. Representatives Jaime Herrera Beutler (D-WA) and Katie Porter (D-CA) have recently reintroduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R.1235), “which will prohibit using an individual’s mental or physical disability as the sole basis of determining their eligibility for an organ transplant.” 

While 13 U.S. states have passed legislation forbidding discrimination in organ transplant surgery on the basis of disability, bias persist. H.R. 1235 would ensure that disabled people in the remaining 37 states can have their health needs met without fear. In December 2020, the American Academy of Pediatrics issued a policy statement warning physicians and hospitals that denying transplants to people with disabilities could be both discriminatory and illegal.

You can help protect people with disabilities like Sierra by emailing or phoning your U.S. House and Senate representatives directly to support H.R. 1235. You may also call the U.S. Capitol Switchboard at (202) 224-3121 and ask to be connected to a particular office. 

If you or someone you love has encountered discrimination in obtaining an organ transplant because of a disability, please share your story with Little Lobbyists! 

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Julie Ayers is is the Service-Learning Specialist for the Maryland State Department of Education where she oversees Maryland’s ground breaking service-learning graduation requirement. She’s taught at the Florida Institute of Technology and been an adjunct instructor at Loyola College of Maryland. She has also worked in the Maryland non-profit poverty solutions sector and was responsible for developing the Kids Helping Kids anti-hunger curriculum. Julie has created many publications supporting, and several articles on, Maryland’s service-learning program. But most importantly, she is mother to two wonderful humans, Sierra and Sawyer.

Abby had a history of seizures, but this one was very different. 

The snow had been falling steadily outside the window as another winter storm moved in over our rural town in western Pennsylvania. My husband, a pilot, was away on a business trip, and I was just getting my preschooler ready for bed after a long warm bath. It felt like a perfectly cozy winter night. I laid her down on her bed, wrapped in a soft bath blanket, while I picked out some pink pajamas with little polar bears on them. As I looked back at her I saw it. Her body was stiffening and shaking while her eyes were vacant. It only lasted about 30 seconds, but it felt like an eternity. 

After that night, Abby’s team started documenting more and more seizures. Her neurologist believed she was having upwards of 30 seizures a day that we just weren’t able to see. Her team started to warn of seizure progression. So we hopped on the merry-go-round of medication trials. One after the other. Carefully weaning onto and then off of each one. One made her sleep all day, and the next showed no seizure control at all. A third made the seizures worse, and so on. 

Abby lived her life in the fog of the nearly continuous seizures, combined with the medication-induced fog of whichever drug we were trying now. We finally settled on one, but we had to continually increase the dose and Abby lost weight and seemed regularly more tired, as the medication stole her appetite and energy. 

Photograph of Abby, a 6 year old girl wearing an Elsa nightgown, glasses and bandages around her head wrapping up EEG wires while sitting in a chair next to a hospital bed holding Mickey Mouse and Minnie Mouse dolls.

As Abby’s seizures progressed, we decided to add CBD, and, later, THC, the two main components of cannabis. The effect was dramatic. The seizures all but disappeared. A year and a half after adding THC, her team at a world-renowned medical center decided to try taking her off of her pharmaceutical medication. In order to do this safely, she had to be admitted as the medicine slowly worked its way out of her system. They kept her hooked up to IVs and a continuous EEG for the entire admission--just in case, they told me. They wanted to be able to intervene quickly. They slowly titrated down and eventually stopped her medication. Then we watched and waited. 

Stopping a pharmaceutical epilepsy medication can be very similar to weaning someone off of heroin or other opioids. These medications are powerfully addictive, and the risks of stopping them suddenly include triggering massive seizures or even death. Cannabis is not physically addictive. You can safely stop taking it without any adverse reactions. Once Abby’s team felt satisfied that it was safe to discharge her, they sent her home with instructions for only one medication--the one that they said was the safest and most effective for her--medical cannabis. 

With the pharmaceutical drug out of her system, she became more alert, got her appetite back, and friends and teachers immediately started commenting on how different she was-- more engaged, more alert, happier, and more energetic. After spending half of her life on a medication that was sapping her of energy, we were suddenly treated to the full feistiness of our spunky little one, and it was amazing.

We cannot cross state lines with Abby’s cannabis while it is federally illegal. When we started her on THC, it was with a letter from the state of Pennsylvania guaranteeing safe harbor inside state lines, but nowhere else. Many families, including ours, use cannabis not just as a regular daily medication, but often a rescue dose during a seizure. Leaving it at home is not always an option.

Traveling with medical cannabis presents a host of legal challenges--especially if you happen to cross state lines. Documentation requirements vary from state to state and can be a major barrier to care for many families due to the fees, required background checks, and even banking rules involved. These requirements exist because medical cannabis is still illegal at the federal level. The irony is that all that documentation isn’t required for far more potent medications. Without medical cannabis being legalized at the federal level, there is simply too much legal grey area for families--especially those who are already marginalized and at risk during a traffic stop as we have seen too often. 

Families often have to balance the benefit of a potentially life-saving medication with the risk of losing custody of their medically complex child, and, in some cases, even going to jail.  

No family should have to choose between their child’s health and unjust legal consequences. It is time for our legislators to legalize medical cannabis at the federal level so that our children can have full access to the medication they need to not only survive, but thrive. 

Erin Gabriel is the National Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania. This story was shared with Abby’s permission.

Photograph of Abby, a little girl with brown hair and glasses, now age 11, wearing a pink life vest, seated in the front of a boat on a river, with her hands up in the air and laughing excitedly as though on a roller coaster ride.

My son Sam is a superstar.  He’s outgoing, athletic, loves basketball, sings country music, is learning how to play guitar, and he’s enthusiastic about comedy, conversation, and history. In 2009, I learned Sam was autistic. With a background in social work and child welfare, I imagined I was well prepared. Instead, I had a lot of work to do. 

Sam has blonde hair and is wearing a sweatshirt. He is outdoors, looking at the camera and smiling.

Throughout elementary school and 5th grade, Sam was thriving and enjoying life more than ever. My superstar became a high scoring shooter on a rec league basketball team and was well loved in the community for his outgoing and friendly greetings and comedic conversations.

When Sam started middle school, all of the changes increased his anxiety, and he began to shut down during math class. Unfortunately, his teachers didn’t recognize his high level generalized anxiety, including a physical somatic response, even though it was expressly mentioned in the IEP.

In March of 2015, Sam’s anxiety was at peak level, and he refused to go into the math classroom. At first, teachers offered him time in the “resource room” with the behavioral interventionist. While being escorted to the resource room, Sam “eloped” – he broke away from staff and was immediately restrained on his back on the floor, by four adults – only one of whom had behavior intervention training.

Here is what Sam had to say about this experience five years later (for the full conversation, see  the video):

Daya: So when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.

The day after that one-time restraint, I lost my child as I knew him. Sam couldn’t speak, couldn’t feed himself, was aggressive and self-injurious, and appeared to have regressed to a pre-kindergarten reading level after testing at the 4th grade level prior to the restraint.

Restraint and seclusion changed our entire family’s life, in fact, set it on fire for years. What followed were three years full of aggression, fear, and anger. Sam needed psychiatric medication for the first time ever. He became destructive and even lashed out physically. He was changed overnight because the teachers and staff I trusted to care and educate Sam didn’t have the tools they needed to appropriately and empathetically help him through a mental health crisis.

It’s clear that we need legislation to prevent more children from being harmed in school. On May 26, 2021 Congress unveiled the “Keeping Students Safe Act” to protect students from dangerous seclusion and restraint discipline practices in school introduced by Senators Murphy (D-CT), Murray (D-WA), Casey (D-PA), Durbin (D-IL), Kaine (D-VA), Warren (D-MA), Sanders (I-VT), Baldwin (D-WI), Van Hollen (D-MD), Brown (D-OH), Blumenthal (D-CT), Wyden (D-OR), and Duckworth (D-IL):

“The Keeping All Students Safe Act would make it illegal for any school receiving federal taxpayer money to seclude children and would ban dangerous restraint practices that restrict children’s breathing, such as prone or supine restraint. The bill would also prohibit schools from physically restraining children, except when necessary to protect students and staff. The bill would better equip school personnel with the training they need to address school-expected behavior with evidence-based proactive strategies, require states to monitor the law’s implementation, and increase transparency and oversight to prevent future abuse of students.”  

Today, even during these Covid-19 days, Sam is beginning to thrive again. He’s now in the 11th grade, and has mostly rebuilt the skills he lost while he navigates his world academically and socially with autism. He continues to play basketball (when there’s no pandemic), and has regained most of his verbal skills. He’s a growing self-advocate who wants to help ensure laws are passed to make restraint and seclusion illegal. 

Once again, in Sam’s own words: 
Daya: So what would you tell Congress about restraining in school;
remember we're talking about the bill called Keeping All Students Safe Act.
So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.

It’s our wish that other families be protected by federal law from such a traumatic course of events. We have all been changed by this experience, and in hindsight, the trauma caused by the restraint could have been prevented by such easy and deliberate choices such as employing better practices in crisis intervention – just as KASSA provides. Federal legislators have introduced restraint and seclusion bills since 2009! The Keeping All Students Safe Act was first introduced in 2011, with  iterations reintroduced in 2015 and 2018 without passage in the Senate. It’s time to see this pass!

To advocate for Keeping All Students Safe Act, Sam recounts the story of his restraint and seclusion.
Transcript:
Daya: Alright, how old were you when you were restrained?
Sam:  12
Daya: what grade was that?
Sam: Sixth.
Daya: How come you were restrained?
Sam: I was being dangerous and ran away.
Daya: Oh! You ran away. 
Sam: Yeah.
Daya: Okay so you ran away from where?
Sam: The resource room. 
Daya: Why were you in a resource room?
Sam: Because I didn't want to go to math with Mr. Parker.
Daya: What were your feelings about math?
Sam: Hard. 
Daya: Okay, so when you were restrained after you ran away, how many adults restrained you? 
Sam: Four.
Daya: How did that make you feel?
Sam: Worried. Just just a little worried, worried, sad, really upset. 
Daya: Then, how did it make you feel the next day?  
Sam: I was having trouble remembering stuff: eating, drinking, playing, learning about the presidents, talking.
Daya: All the stuff you learned from kindergarten, right?
Sam: Right. 
Daya: So what would you tell Congress about restraining in school; remember we're talking about the bill called Keeping All Students Safe Act. So what would you tell Congress about laws they could pass to protect kids like you?
Sam: Students should not be restrained at school especially.
Daya: How come? 
Sam: Because adults should train better. Should be trained better to help kids.
Daya: And so tell me about your rights: Do you have the right to be safe at school? 
Sam: Yeah.
Daya: Do you want to stop this from happening to other students?
Sam: Yes.
Daya: How come?
Sam: Because they should be trained better.
Daya: Okay, well thank you very much for this interview. I appreciate you talking about such a hard thing. 
Sam: Bye-bye.

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Daya Chaney Webb is a Little Lobbyists Ambassador and Sam’s mom. She has a background in social work and child welfare, and is an expert in special education law and IEP development and implementation. She has helped other parents as a volunteer family advocate. The absence of legislation protecting kids with disabilities in school led her to lobbying work, most recently with The Alliance Against Seclusion & Restraint as Legislative Director.

Sienna Striner. She has short brown hair, a big smile, and wears a yellow t-shirt with the words, “I am Sienna. I can & I will. Just watch me.”

I am the mother of two beautiful girls, Sienna, age 4, and Haley, age 7. Sienna is a remarkable little girl who loves life. She is a smiley, energetic, empathetic ray of sunshine. Her favorite activity is spending time with her big sister, whom she adores. If we let her, she would watch Sesame Street all day. Elmo is a way of life in our house. She loves music, books, therapy, and playing outside. She is mischievous, funny, and beautiful. She has the ability to bring smiles to our family on the worst of days. We wouldn't change one thing about her. Sienna happens to have an extra copy of her 21st chromosome, also known as Trisomy 21 or Down syndrome. 

When I see President Trump trying to repeal the ACA and take services and medical care away from our community, it breaks my heart. Once again, we as parents are forced to suit up for battle and prove that our children are worthy of health care. Health care is a right. Not every parent of a child with disabilities has the endless resources that Judge Amy Coney Barrett seems to have. As a fellow mom of a disabled child, I would expect Judge Barrett to fight for the ACA alongside us, but her record demonstrates just the opposite. 

Sienna's diagnosis came as a surprise to us. After I endured four miscarriages, she was our miracle baby. Our miracle baby surprised us on the day of her birth with her diagnosis and a heart condition. We were completely unprepared to raise a child with a disability. After I delivered her, a kind nurse explained to me how lucky we were to have Sienna here in Pennsylvania after the passage of the Affordable Care Act (ACA). 

Sienna was born with multiple pre-existing conditions that insurance could have refused to cover prior to the ACA. The nurse also explained that as a disabled child in Pennsylvania, Sienna qualified for Medicaid--which is in danger of losing significant funding if the ACA were to be repealed. At the time, in the fog of Sienna’s diagnosis, I didn’t realize the significance of that conversation. Over time, the depth of her words revealed themselves.   

As I entered this new world of early intervention, therapies, and medical needs, I began to realize just how much of a financial toll this would have taken on us if it weren't for the protections of the ACA and Medicaid. Custom orthotics, outpatient weekly therapies, overnight hospital stays, adaptive strollers, walkers, safety sleepers, echocardiograms, communication devices, bloodwork--the list goes on. One after the other, I opened the explanation of benefits statements, and when I saw the hard costs of all the services we needed, I was shocked. Sienna receives seven weekly therapies.The costs of those alone are $3,400 per week. Without the ACA, her therapies and medical care would have quickly exceeded a lifetime cap. Sienna would have been uninsurable for the rest of her life and left without access to life-saving care. 

Shannon Striner with her daughters Haley and Sienna. Shannon has long blond hair & wears a bright pink sleeveless shirt and white jeans. Haley has long brown hair & wears a sleeveless white dress with a butterfly print. Sienna wears a dress with the same fabric in a blue background. The family is standing outside in front of a picket fence.

We are fortunate to have Medicaid helping with the significant additional expenses not covered by our private insurance. Without Medicaid, we could never afford it all, and Sienna would suffer in the long run. We’d be forced to make tough decisions: like what's more important, that Sienna eats safely and communicates clearly or that we keep a roof over our heads? 

I am proud to be Sienna’s mom. This journey is full of wonder, joy, and unimaginable love. It changes life's most ordinary moments into the extraordinary. But with constant attacks on our health care, it's also agonizing work, hard decisions, and constant advocacy. It gets exhausting fighting for your child, having to prove their value to the world. 

I want to personally thank you, Senator Casey, for your efforts in advocating for our families. You have made a huge difference in our lives. As an everyday Mom, I am also here to demand that you and your colleagues continue to fight for the ACA so that our kids can access the health care they need to not just survive, but thrive. Everyone loses if our children are unable to reach their fullest potential.

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Shannon Striner is a member of Little Lobbyists. She lives in Pittsburgh, Pennsylvania. This blog is adapted from remarks she presented to Senator Bob Casey on October 1, 2020.

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. 

Samantha and Little Lobbyists Josephine

Samantha McGovern lives in Springfield, Virginia, with her daughter Josephine and her husband. Samatha is a member of Little Lobbyists. 

Tell me about your family’s medical needs.
We’re a pretty unique family of three: each of us has medical needs. Two years ago, Josephine’s dad was treated for Stage IV Hodgkin's Lymphoma, and we’re thankful he’s in remission. Almost a year ago, I was diagnosed with Stage III Anaplastic Astrocytoma (a type of brain cancer), and I’m at high risk for seizures now. Even though I’m doing well, it’s not safe for me to be the sole caregiver for our daughter Josephine. 

Josephine was a micro-preemie, born at exactly 24 weeks gestation, 1 lb., 12 oz., and 12 inches long. She was the size of six pieces of butter. As a result of her early birth Josephine had poor lung development. Her initial hospitalization was 13 months, and included heavy sedation. At the time of discharge, she was vent dependent, which resulted in delays in walking, eating, and speech. 

Today, Josephine uses a trach so she can sleep and breath safely. She has many specialists and requires a nurse to get to school. She eats by mouth now, but still meets her fluid needs via her g-tube. She speaks with a communication device, the Accent 800. 

My favorite part of Josephine’s medical needs is that they are manageable. Often, people think less of her because of them, but, in reality, she recognizes their doubts and manipulates them like a typical four year old!

Josephine riding her bike.

What steps are you taking to protect Josephine and your family during the pandemic? 
For the most part, we’re living a "normal" winter life. After Josephine was initially discharged from the hospital, February 2017, we kept her house-bound every year during cold and flu season, and we still do, except for therapy and medical appointments. Our therapists always cancel appointments if they’re sick with a virus. It’s important to limit Josephine’s exposure to germs because she’s still growing new lung tissue, which is her only real “cure.” Children grow lung tissue until they’re seven years old. 

 How have fears of the coronavirus changed your family routines? 
For the most part our routines have been the same. The hardest part has been that the weather is nice. Josephine wants to be outside to playing. We feel safer inside than outside because we must keep her away from other young kids: they aren’t great about cough or clean hand practices. It makes me sad. But it's been our routine for three years. 

 What have our elected officials done well in terms of coronavirus response? 
I read The New York Times, The Washington Post, and updates from the CDC as my primary sources of information, as well as NPR. I look for interviews with medical professionals, and state and county leaders. I use Facebook to watch our Governor, Ralph Northam. A couple of nights a week, I watch the daily presidential press conference, but mostly to hear medical guidance and CDC suggestions.  

 Our county public schools send out communication via email. Some of it’s helpful, and some of it’s more along the lines of, they will have more information soon. Our schools also use text alerts to direct us to emails with important information.  

What do you think our elected officials could do better? 
At first, I was really happy with the way Virginia State and Fairfax County governments were handling the problem. As time has gone on, my feelings have really varied. For example, I feel safer at a well-managed, clean, evenly-spaced farmers market then I do in a grocery store. There is a vendor there that makes food just for my daughter. But it was closed without notice, even though the business was seriously managing itself correctly. 

I wish more information was shared about hospitals’ approaches to the coronavirus. I’ve learned about back-up bed units for Virginia, but I’d like to know what hospital units are safest for a reason unrelated to COVID-19. For example, it’s possible for my daughter to rip out her g-tube. She would have to go to a hospital for that to be fixed. She won’t let us do it at home. In that event, I wouldn’t be sure how to handle it, or where to go. 

 Some people still say coronavirus fears are over the top--what's your response? 
Washing your hands and staying home when you’re sick really does make a difference. We’ve done this since the day Josephine was born. We clean our house well. We even had amazing masks on-hand because if we’ve been sick, masks have worked to prevent the spread of viruses!

I regularly reach out and give support to fellow preemie moms, especially micro-preemie moms, because we’re so well-trained when it comes to germ management. I’m not subtle about correcting people who don’t get it. I’ve even corrected doctors, nurses, and respiratory therapists who’ve made a mistake, like not using hand sanitizer before touching Josephine. 

In these troubling times, what gives you hope? 
What gives me hope in this moment? That at the end of it, people may have a better understanding of what my regular life looks like. They may be more likely to video chat with me when I have to telework. They may find creative ways to engage with Josephine during cold and flu season. And most importantly? They may realize that if they’re sick with anything, even a “basic” cold, that they should stay home. 

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Jeneva and Robert Stone on a recent visit to the Senate Office Buildings.

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a new feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series! 

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Edith, is currently a student at Middlebury College. 

Last week Little Lobbyists joined Senator Van Hollen, Representatives Schkowsky, DeLauro and Doggett, Moms Rising and Lower Drug Prices Now for a press conference on Capitol Hill to demand that any vaccine or treatment developed for the novel coronavirus be affordable and accessible to ALL Americans. Little Lobbyists Yasmin Canales spoke on our behalf, her speech is below:

My name is Yasmin Canales and I am member of Little Lobbyists, an organization who advocates for kids with complex medical needs and disabilities. I am a high school senior, just accepted into my top 2 choices for college. I love swimming, work as a lifeguard, and am a youth group leader with a passion for sharing my faith. I was also born with a genetic disease called Cystic Fibrosis, which affects all my organs, but especially my respiratory and digestive systems. Since birth, I have had over 30 hospitalizations for weeks at a time as well as 15 surgeries. I take 21 different medications, including over 35 pills daily, and 2-4 hours of intense respiratory therapies. 

The medicines I need to stay alive cost over $23,000 for one month. Many of these drugs are so expensive because the companies that make them have a monopoly, allowing them to set prices as high as they want. It is extremely frustrating to know our public tax dollars fund much of the research for these medicines, but we can’t afford them because private pharmaceutical corporations are allowed to inflate prices to pad their profits. 

Regarding the outbreak of the novel coronavirus, COVID-19, the administration has said they won't promise a vaccine will be available or affordable for everyone, because pharmaceutical companies need to make money. But 27 million Americans are uninsured, 34 million working people have no paid sick days, and we are in contact with one another every day. Affordable, equal access to ALL for any treatment or vaccine for the novel coronavirus is of the utmost importance to me. My compromised immune system and my lowered lung function will not be able to fight off this novel virus, and I might die if access is denied to myself or those around me. When the virus spreads into my community, my life and the lives of people like myself and many other children with complex medical needs, is on the line.

The availability of a future vaccine or treatment for this global pandemic should not be in question. There is currently a provision in the Affordable Care Act mandating all federally recommended vaccines be provided at no cost. Public taxpayer funds have already gone into coronavirus research - we’ve already paid for it and we should be guaranteed affordable access. 

There are things more important than profits, like our health. I want to thank Senator Van Hollen and Representatives Schkowsky and Doggett for holding the Administration accountable by saying no monopoly for coronavirus drugs. The safety of every American, of every person we love, in the face of this global pandemic should be everyone's top priority - especially our government's.

My five-year-old daughter Louisa wakes up eager to attend preschool every day. She loves singing and dancing, and enjoys playing with Play Doh, as well as listening to endless bedtime story books. Louisa was also born with a rare and severe heart condition – Hypoplastic Left Heart Syndrome (HLHS), in which the left side of the heart is critically underdeveloped and does not supply the body with enough oxygenated blood. HLHS was a devastating diagnosis, but thanks to improved outcomes due to progress in science and surgery, our dedicated medical team, and access to quality health insurance, we have hope.

Louisa recently started taking a medication to lower her elevated lung pressures, a generic drug called Sildenafil, best known by its brand name Viagra. Yes, Viagra, the erectile dysfunction drug currently on the market in an over-the-counter pill form for $20 per month. Sildenafil has become a standard of care for babies and children with pulmonary hypertension and vascular resistance. One physician told me recently that 40% of their patients with Louisa’s heart condition are benefiting from this medication.

Small children and babies cannot take Sildenafil in pill form; it must be titrated in small oral suspension doses, available only by prescription, often in dosages too exact to cut and crush pills at home. However, the out-of-pocket cost of Sildenafil oral suspension is 300-600 times more than the out-of-pocket cost of the pill. Our family recently faced a crisis when we dealt with a delay in approval. Our nonprofit hospital pharmacy quoted us a cash price of $12,000 per month, out-of-pocket.

Fortunately, our insurer’s nurse case manager and Louisa’s cardiology staff were able to expedite approval. However, the insurance-covered rate was a steep $6,227.42 per month. While things worked out for our family, it is deeply concerning to know our child is dependent on a medication we cannot begin to afford without quality insurance. Other families have not been as lucky – one family in our situation faced a six-week delay in getting this medicine approved, although their child’s heart health is declining. Another had to pay $6,000 for one month, out of pocket, in order to avoid delaying necessary treatment.

This past June, when the FDA approved Novitium Pharma’s generic oral suspension of Sildenafil, Novitium’s CEO Chad Gassert said via press release: “We are pleased to announce that the launch of Sildenafil for oral suspension has already initiated. Novitium remains dedicated to providing patients with a steady supply of affordable treatment options, and to progressing the availability of generics in niche therapeutic categories.”

How can a family afford to pay $6,000 to $12,000 per month to keep their baby with a heart condition alive? Louisa takes nine additional medications – why should this one generic medication cost so much? Why do men with erectile dysfunction get a bargain basement price for the same generic medication? The reason is simple. There are currently no regulations on the cost of medicine in our country, so for-profit pharmaceutical companies charge whatever they think they can get for medication. And it’s not just my daughter’s medication – common medicines which have been on the market for decades, like epipens and insulin, cost thousands. Pharmaceutical companies know families like mine will do whatever it takes to keep our loved ones alive. All of us pay for the inflated costs of medications; these are being passed right back to all of us in the form of higher premiums and copays..

This fall, the House of Representatives has been holding hearings on H.R. 3, The Elijah E. Cummings Lower Drug Costs Now Act of 2019, introduced in June 2019. H.R. 3 requires the Center for Medicare & Medicaid Services (CMS) to negotiate with pharma companies for certain extremely expensive prescription drugs – current law does not allow CMS to do so. The Congressional Budget Office (CBO) estimates that Medicare Part D patients would save up to 55% on prescription drugs in the first round of negotiations, and 40 to 50% in subsequent rounds. The negotiated price would be based on 120% of the average cost of the drug in other industrialized countries, or 85% of the average U.S. manufacturer price.

The Lower Drug Costs Now Act would also lower the price of prescription drugs under private insurance plans, provided the insurer offers the negotiated CMS rates.

It’s vital that we reduce the cost of prescription drugs in the U.S. – the lives of uncountable numbers of infants, children, and adults depend on it. The Lower Drug Costs Now Act (H.R. 3) will be brought to a vote this week in the House of Representatives: Please contact your representative now and urge them to vote yes on H.R. 3.

Louisa helping her family with yard work.

My name is Tasha Nelson and I want to talk to you about my amazing son Jack.

Jack is a spirited, funny and imaginative 8 year old. He has a passion for Marshmello, video games, extreme weather and the Titanic. He sings in our local children's choir, is on our neighborhood swim team, and enjoys being  a cub scout. He is a little boy who loves music and science. If you ask him what he wants to be when he grows up, hell tell you “a DJ like Marhsmello that is also a doctor who cures cancer”. 

My little DJ-Doctor Jack was born and lives with a disease called Cystic Fibrosis. While this is thought of primarily as a lung disease, the truth is it affects nearly every major organ and system of his body. At one month old, Jack received this diagnosis and the first of what would become one of many daily life saving medications. This medication allowed him to digest food, something he had failed to do every day since he was born. The price tag on that medication? I was responsible for $240 per month.

 At 3 months old, Jack required another medication vital to his life. His mucous had become so thick in his sinuses that it was the consistency of chewing gum, and he struggled to breathe. His doctor prescribed a new daily medication that would help him breathe. 

My baby was struggling to breathe, and we had a solution available but the doctor told me that we would need a prior authorization from our insurance in order to fill the prescription. I called my insurance to ask how long this would take and was told 7-10 days if approved. IF approved. My baby needed to breathe and I was being told it may or not be approved for 7-10 days. AND the price tag on that medication?  I was responsible for $1,200 per month. 

As Jack ages, his disease requires him to take more and more medicine. New innovations in research and development are resulting in some extraordinary medications that have an even more extraordinary price tag. The median cost of medications for a person living with Cystic Fibrosis in the United States is nearly half a million dollars a year. Depending on your insurance plan, the cost to your family can vary anywhere from several hundred dollars per month to thousands. This is for life-saving medication, and I don’t think my son’s life should have a price tag. 

Every single day families like mine sell our things online or in yard sales, or start go-fund-me campaigns in an attempt to afford the medications our babies need. We do everything we can to avoid medical bankruptcy. We do everything we can to get the medication that keeps our kids alive.

What do we need to fix this broken system and change it to promote the well being of our chronically ill, rare disease, and disabled populations? We need formularies to no longer exist. We need prior authorizations to no longer exist.  We need innovation, research and development of new medications to continue, but the cost cannot be bankrupting families that are doing everything they can to keep their babies alive. A medication is only life-saving in use if it is accessible to the patient. If I can’t afford it, Jack can’t benefit from it. 

Children like Jack need their government to stand up to pharmaceutical manufacturers, pharmacy benefit managers, and insurance companies and say NO MORE. NO MORE will pharmaceutical companies continue to prioritize bloated corporate profits over patient lives. My son Jack, and all of the children like him, deserve better.

[image description: Little Lobbyists mom and director of operations, Tasha Nelson, speaking at the podium of a press conference for affordable pharmaceuticals.]

These remarks were given on September 25, 2019 at a press conference on Affordable Pharmaceuticals with Speaker Nancy Pelosi.

Reports by the New York Times, Huffington Post and Yahoo News, among a myriad of additional media outlets regarding the treatment and conditions in detention centers all over the southern border are chilling and infuriating. We’re learning  that U.S. Border Patrol agents are confiscating children’s medication. They are being kept in unsafe and unsanitary conditions, exposed to temperature extremes, without access to hygiene items we all take for granted and are even being kept from hand washing, despite cold and flu outbreaks. For those of us in the Little Lobbyists community, the reports are terrifying. Our children have complex medical conditions and disabilities, and while the U.S. health care system offers daily threats to our children’s lives, we have the ability to stay home and fight back.

None of us in the U.S. should remain complacent about the privilege citizenship offers us. Like the migrants seeking asylum at our southern border, any of us might have to flee our homes and seek shelter and good will elsewhere. Over the last several years, thousands of U.S. citizens, including the families of children with complex medical needs, have had to flee natural disasters, seeking safe harbor in other states. Little Lobbyists has been one of many organizations sending crucial medical supplies to charities distributing these essential items to U.S. citizens who have had to leave such first world luxuries behind. Children’s lives hung in the balance.

My own son is 22; on 9/11, Robert was only 4 years old, a Buzz Lightyear fan enrolled in preschool. Our family lives in Bethesda, Maryland, and we were face to face with fear that day: Should we stay put and hope for the best, or should we join the gridlock on major highways to flee the area? We chose to stay because packing Robert’s medical equipment (including machines that require electricity), his multiple medications (some of which require refrigeration), and his other personal supplies (most ordered from medical specialty vendors), seemed overwhelming. 

Had Robert needed only one or two prescription drugs, however, I think we would have fled. That’s the reality for current migrant families facing political turmoil and immediate danger. Equally stark were decisions made by U.S. citizens fleeing recent hurricanes Harvey, Katrina, and Maria; many remain displaced to the current day.

On 9/11, my family put our faith in a belief the world would return to normal. But no one in the DC metro area really knew what might happen next. Were we lucky? Or were we trapped within a first-world fantasy of citizenship? Given current U.S. policy, if my family had to flee a disaster today, could we expect any better than to have Robert separated from us, stripped of his medications and medical devices? Would other nations treat us any better than we’re treating their citizens now? Robert would die within 72 hours, too late for any humanitarian agency to intervene. 

The events of 9/11 left me terrified. After the F-16s stopped rattling the windows of our home, after the Jersey barriers went up in front of congressional office buildings, after Robert returned to school, I grabbed a cheap green backpack and methodically packed every essential item Rob would need to spend five days on the road to some place safe. Every September for almost a decade, I replaced the pills and solvents and tubes and syringes to ensure the backpack would be ready to go at a moment’s notice. That green backpack had a special place in Rob’s closet. We all knew where to find it.

How can our government confiscate the backpacks of children like my son? Backpacks hurriedly filled by anxious parents fleeing political violence? How can border patrol agents refuse medication to children with epilepsy, asthma, diabetes, and many other diseases? Why is the treatment of medically complex children at our border even controversial?

The situation at our border merely reflects the broader systemic cruelty of our domestic health care. If Robert and I had to flee Maryland today, even to Delaware or West Virginia, what Robert needs to survive and thrive might not be available to us, simply because Medicaid rules and covered items are not the same, state to state. Even Medicaid as a form of insurance is not transferable from one state to another. Our zipcodes have become borders and barriers to treatment for our most vulnerable citizens.

In fact, any U.S. citizen who takes a prescription medication is vulnerable in the event of an emergency that requires crossing state lines, let alone international borders. Some private insurers are local, some are national, and state and federal regulations for prescription drugs are complex. 

It’s said we are a nation of immigrants. Each of us needs to keep that in mind, and push our elected representatives to ensure basic human decency at our borders, the basic human right for refugees to carry essential medication to continue treatment. We would want the same human courtesy extended to us should any of us have to flee the comfort of our homes. 

As the mother of a medically complex young man, I dare to hope that the U.S. can do more for all medical immigrants, both within its own borders and at its international boundaries.

Photo provided by U.S. Customs and Border Protection of children at the Central Processing Center on June 17, 2018 in McAllen, Texas.

The following is the transcript from remarks given on 4/24/2019 at the Stop The Shock Washington D.C. Wait-in hosted by The Autistic Self Advocacy Network.

Laura giving her speech at the Stop the Shock wait-in.

Hello, my name is Laura Hatcher. My son, Simon, and the rest of our family are members of Little Lobbyists. We support Simon in his self-advocacy as a person with disabilities and complex medical needs, and we advocate together to create the kind of future all our families deserve - a future that does not include electrical shock for people with disabilities.

I’m also a college professor and creative consultant and I mostly work from a home office. Sometimes it gets a bit too quiet, so I put the TV on for background noise while I work. One morning fairly recently I caught a bit of a talk show – it’s called “The Doctors” – and I was surprised to hear one of their topics for discussion was the electric shock “therapy” of people with disabilities in use at the Judge Rotenberg Center.

We don’t often hear issues of disability rights in mainstream media so I was pretty interested to see how this discussion would go. As the host introduced the segment and the camera panned the audience I was glad to see the co-hosts and audience members were genuinely surprised and appalled to learn that this barbaric abuse is happening here, in the United States, in 2019.

Then, following the formula of shows like this -- they went on to question the so-called “experts” to learn more.

First, they asked a psychiatrist from a well known university about the practice, who firmly denounced it as torture and pointed out that there are myriad other far better treatment options available to individuals with disabilities and their families.

Next, predictably, they asked a representative from the Judge Rotenberg Center why - if the first specialist was correct -- the JRC persisted in its use of electric shock devices.

The JRC Clinical Director summarily dismissed the United Nations report stating that the use of Gradual Electronic Decelorators (GEDs) is torture. He claimed, that despite evidence to the contrary, they no longer really hurt people. He even claimed that they’d had some success with really tough cases, for problems nowhere else could deal with. As he spoke, I noticed that the way he talked about the people he was supposed to be caring for was dehumanizing. To him, they were cases not community members. They were big, scary problems -- not real, vulnerable people.

The co-hosts and audience members listened to this exchange with furrowed brows. They acknowledged that this was indeed a difficult problem. And then they cut to commercial.

I hoped that, when the show resumed, they’d have included a person with disabilities on their panel to respond. To provide a much needed first hand account of the damage abuse masked as discipline or, more insidiously, therapy, has. To explain that it does not heal anything or anyone. Instead it causes fear, anxiety, and lasting trauma.

But that didn’t happen. Instead they started on a new segment about mites living in eyelash extensions.

“The Doctors” never asked a person with Autism, like my 13 year old Little Lobbyists Simon, who has complex medical needs and physical and intellectual disabilities, what they really needed to understand. They never asked families like mine if the JRC clinical director was disconnected and dehumanizing in his assumptions about our loved ones.

If they had, they would have learned that just being secluded by an aide in school when Simon was in the first grade led to months of acute separation anxiety for him - communicated to us through sudden, painful meltdowns; and to years’ of guilt, fear, and an inability to trust outside caregivers for us, his parents who love him.

They might have learned that many families like mine are desperate, but not in the way described by the JRC clinical director. We are desperate to have the lives of our loved ones valued. To be counted as full members of our communities - the sort of people whose opinion would be worth getting when discussing their lives on a mainstream talk show.

No, they never asked. So we just have to tell them.

We need everyone -- even the talking heads, doctors, and so-called specialists – to recognize that people with disabilities are people and that “behaviors” are communication. We need them to be aware that there are insufficient resources to support people with disabilities in their homes and communities. We need everyone to understand that treating people to improve their health and well-being is NOT the same as shutting them away and shocking them into submission.  

We are here to remind the FDA that every day they delay banning the use of electric shock another person is subjected to treatment the United Nations has classified as torture. We are here to remind the United States of America that the imprisonment and torture of disabled people is wrong.

I sometimes think our government administrators have a lot in common with talk show hosts. They pan the audience for reactions but rarely ask for the input of true experts -- the people impacted. They observe commercial breaks and hope we will simply tune out.

But we cannot change the channel. I cannot bear the thought of a person like my son being tortured for simply being who they are by anyone too lazy, incompetent, or cruel to understand their needs. I know you can’t either.

People with disabilities are still being tortured today. Every moment we are waiting for the FDA to ban this practice is a moment too long. It is time to stop the shock.

To learn more, visit: www.autisticadvocacy.org/stoptheshock/

[Image description: An illustration of a construction site-style metal warning sign. At the top, white text on a red background reads: ATTENTION! Below that is large text which reads: “PEOPLE WITH DISABILITIES ARE STILL BEING TORTURED AT THE JRC.” Next to the text is a warning symbol depicting a person being electrocuted against a yellow triangle background. Below the warning symbol is text reading #StopTheShock. There is a post-it note on the sign that says #WeAreStillWaiting.]