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.

The cover of Kelley’s book, white and blue lettering on a bright green color gradient. To the right is a color photo of Kelley, a white woman with red hair who wears glasses and poses with her arms folded over a stack of books.

Kelley Coleman is the mom to two amazing boys, one of whom has multiple disabilities (including an as-yet-undiagnosed genetic syndrome, cerebral palsy, autism, CVI, epilepsy, and more). Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports stems from her own experience, giving parents the tools to spend less time navigating stuff and more time loving their kids exactly as they are. 

This honest and relatable book is a roadmap to parenting a disabled child, covering all the essential topics we struggle with: diagnosis, school, doctors, insurance, financial planning, disability rights, and life as a parent caregiver. And there are templates you can use! And tons of links to resources in the appendix!

Kelley’s empathy shines through, page after page. As a reader, I never felt that she was telling me how I should be doing anything. Rather, her voice was like the spirit guide to parenting I’ve always wanted, telling me how I could do all the hard things, making suggestions and holding my hand. After 20+ years as a parent-caregiver, I still don’t know what I’m doing half the time, but I keep trying. And that’s one of Kelley’s messages to our community–keep going, try and fail, and try again. You can do it.

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Black & white photo of a younger Kelley and her infant son Aaron. Their faces are in profile. She is kissing his forehead.

JS: Clearly, this book arose from your personal experiences struggling with the system, but was there a particular "aha!" moment when you realized, I have to write a book?

KC: I think all parents of kids with disabilities have been told we should write a book. I never thought I would write a book about how to do all of the stuff - it just sounded so boring. But, after a long night with Aaron having medical issues and none of us getting much sleep, I hit a wall. I realized that the only way we got through everything was by knowing how to do all of the stuff. That day, I realized that I needed to write the book. I wanted everyone to have access to the information of how to tackle the paperwork and the planning - the stuff that we all have to learn from the ground up, and that our kids depend on, and that is just so overwhelming. I realized right away that it was the opposite of boring - it’s life-changing. 

JS: One of the things I loved about this book was your honesty: that you're still learning. Of all the topics you covered, in which area, personally, do you feel you're succeeding right now? In which do you struggle the most?

KC: Because I’m still learning every day, that answer will change every day. Today I feel like I’m succeeding with the social services piece. I just sent in our annual mountain of paperwork, and have found ways for our social service system to spend less money getting better supports for my son. That feels great. And, where am I struggling the most? The disability rights and advocacy piece is still a big learning curve for me. I’m always working on the balance between being my son’s advocate and teaching him to advocate for himself. His communication is emerging, and I find that I need to take more time to follow his lead and to build self advocacy into every part of his life. It would often be faster for me to power through, but then I’m not teaching him. The more I slow down, the more he teaches me. 

JS: You emphasize the joy of raising disabled children, which is so wonderful! If books are surrogate children, as some say they are, writing which part of the book gave you the most joy?

Aaron, who wears glasses and has a medal on a ribbon around his neck, raises his hands up in triumph. He is in a classroom with a screen behind him that shows gold confetti.

KC: Writing a book - just like raising a child - is all the things. So much joy - and also every bit of the ups and downs that bring you to that joy. Connecting with leaders in the disability community was an amazing highlight. These are people I’ve looked up to for years, and when they said yes to being interviewed, I was humbled and appreciative. If Judy Heumann invites you to her house, you say yes. I was so fortunate to be able to spend time with her in person before she passed. 

JS: What are the three main takeaways you'd like families to absorb from this book? 

KC: It’s hard to choose three. But since you asked: 

1. Learn about disability from disabled people. It shouldn’t be revolutionary to seek firsthand experience, but too often we forget that piece. When we learn from disabled people, we connect to a community and find role models to follow. 

2. Caregiving is a job. All of this paperwork and planning may never be fun. You get better at it. You set up systems. And that allows you the space to be a parent, to enjoy your child, and to separate the mountains of paperwork from the fun of parenting. 

3. Connect with other parents in this situation. We need to stop reinventing the same wheels. Chances are someone has done this before and can show you a better way. And, when you learn a better way, share that with everyone you know. We’re in this together. 

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Kelley Coleman is a feature film development executive turned author and advocate for individuals with disabilities and parent caregivers. She serves on committees for Children’s Hospital Los Angeles, the Los Angeles Unified School District, and Canine Companions. She lives in Los Angeles with her husband, two boys, and her son’s trusty service dog. Learn more about Kelley by visiting her website and following her on Instagram and Facebook.

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.