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

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

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

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

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

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

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

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

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

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

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

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

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Jeneva Stone is the Little Lobbyists blog manager.

Lauren & her daughter Ellie [image description: A mother and daughter with light skin and blond hair pose in front of a leafy backdrop. The daughter has her arms around her mother’s waist. She wears a sage-green dress and turquoise-frame eye glasses. The mom wears a navy blue dress with a tiny white pattern.]

We find ourselves celebrating our third consecutive World Down Syndrome Day (WDSD) against the backdrop of a global pandemic; though, undeniably, something has recently shifted. While much of the world, and certainly much of the United States, has decided that it is time to turn the page, close the book, and go back to “normal,” we are acutely aware, having loved ones with Down syndrome, that it isn’t that simple.

Covid-19 continues to post serious risks to people with Down syndrome and other disabilities, including the unfortunate likelihood of new variants. We also face the heightened challenge of protecting vulnerable members of society when commonsense public health measures like masking and vaccinations have become political weapons wielded in school board meetings and state legislatures.

We must also acknowledge all that has been lost, the trauma we have endured, and the long-standing inequities that have been revealed. School closures and virtual learning have had a devastating and disproportionate impact on the education of school-age children with disabilities including Down syndrome, with many families reporting significant learning loss, struggles to access greatly needed compensatory services, and increasing pressure to move their students with Down syndrome to more restrictive school placements. The situation is dire. 

The serious labor shortage of Direct Support Professionals, a major problem before the pandemic, has now risen to crisis levels, threatening the ability of adults with Down syndrome and other disabilities to participate fully within their communities. And with life-saving therapies and critical healthcare resources in short supply throughout the  pandemic, the healthcare discrimination faced by individuals with Down syndrome and other intellectual/developmental disabilities became more apparent than ever.

And yet, on this World Down Syndrome Day, we find much to celebrate. Our own daughters, Hope and Ellie, whose insistence on living in the moment – this moment right now – remind us of our own remarkable resilience as individuals, families, and communities. Their ability to notice joy in each moment and their grace in both acknowledging and experiencing the hurt and confusion, too, gives us, as their parents, the ability to experience such joy and grace as well. The Down syndrome community has found new ways, amidst great loss and isolation, to connect, maintain relationships, establish new routines, and learn new skills. 

Liz & her daughter Hope [image description: A mother and daughter, both with light skin, pose outdoors. Behind them are green trees and blue sky with clouds. Both mom and daughter have dark hair and wear glasses. They are depicted from shoulders up.]

This year, we also celebrate our first year as co-chairs of the Maryland Down Syndrome Advocacy Coalition (MDAC), an organization that brings together self-advocates, families, professionals, and the five Maryland Down syndrome organizations, to advocate for legislation and policies that will improve the lives of individuals with Down syndrome across the state of Maryland. A year ago today, we came together as co-chairs and partners to revitalize MDAC in this moment of challenge and change. This model of statewide Down syndrome coalitions has been successful across the country and we are honored to be a part of the work here in Maryland as we partner with other advocacy organizations on a variety of issues impacting the disability community.

MDAC currently has two workgroups —  a K-12 education workgroup and a workgroup focused on the issues faced by adults with Down syndrome. Each workgroup meets monthly and, with the ease and accessibility afforded by virtual meetings, we have representatives from across the state ready to share their stories, connect with their legislators, and unite around issues of concern. We are currently focusing on issues such as supported decision making, self-directed services, and inclusive education, particularly for students with significant cognitive disabilities.

We rely on the support of the National Down Syndrome Advocacy Coalition (NDAC), a  member service of the National Down Syndrome Congress (NDSC), both as individual advocates and for guidance and support for our work with MDAC. We urge all of you to become more deeply involved in your own advocacy efforts by finding organizations and other advocates in your own states with whom you find common cause. We are grateful for the hope and energy we feel from coming together to tell our stories and work toward solutions to problems facing our community. 

This World Down Syndrome Day, despite the challenges of the ongoing pandemic, we celebrate our children and feel fortunate to be part of a resilient Down syndrome community. We look forward to another year of organizing, advocating, and working shoulder to shoulder with self-advocates, families, Down syndrome organizations, and other advocates and organizations in the wider disability community to advance meaningful change for Marylanders with Down syndrome. 

Forward with hope,

Liz and Lauren

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Liz Zogby is the co-lead of the Maryland Down Syndrome Advocacy Coalition and a member of the Down Syndrome Association of Maryland (DSAmd), and leads advocacy efforts for the annual Step Up for Down Syndrome Baltimore walk event each October. Liz is the outreach coordinator for the Trace R&D Center at the University of Maryland, an accessibility research center that focuses on the intersection of information and communication technology and disability, as well as a freelance writer and researcher with particular expertise in survey research. She is the mom of three, including her youngest Hope (11) who has Down syndrome, and lives in Baltimore City.

Lauren Ochalek is a Down syndrome advocate, nurse educator, cancer thriver, wife, and mom (her oldest, Ellie, has Down syndrome). She is the co-lead of the Maryland Down Syndrome Advocacy Coalition and serves on the Board of Directors for the Down Syndrome Association of Maryland. Her heart beats for disability rights, legislative advocacy, and promoting meaningful inclusion.

This week, two members of our Little Lobbyists community launched a drive to stop the Montgomery County Public Schools (MCPS) in Maryland from dropping their school mask mandate. Despite excellent organizing efforts and heart-felt testimony, including a petition that captured over 600 signatures in a week, the county Board of Education still voted to drop the mandate. 

What can we learn from this? That we cannot become discouraged when our efforts fall flat. As the great Congressman John Lewis said, "Do not get lost in a sea of despair. Be hopeful, be optimistic. Our struggle is not the struggle of a day, a week, a month, or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble." 

The Witzler family {image description: A family with light skin poses on a bridge across a mountain gorge—a waterfall and trees with leaves turning yellow and orange are in the background. Directly behind the family is a railing with wood cross-beams and black metal staves. The mother and father pose with their two children in between.]

Here’s Peter Witzler’s assessment:

“As a union guy, one of my core values is ‘an injury to one, is an injury to all.’ I also believe that we all do better when we take care of each other. At the end of the day, this was a political decision pushed from the top down: from the CDC, from the Maryland State Board of Education on down to the County Board of Education. It was a political decision that discounted and disregarded the lives of families like mine, forcing the burden fully onto the individual, and absolving the larger community of any responsibility. Politics and policy is a statement of values. And these were not my values.”

Here are some excerpts from Peter and Keir’s testimony that might make good talking points as you deal with your own school systems: 

Peter:

“I am here to ask you to support the kind and compassionate policy choice of universal masking that our community needs right now–and preserve our children’s rights to an education. My son Jackson is one of the millions of Americans who are at higher risk for severe complications and death from COVID-19. 

“I want to tell you a little about Jackson: He is an amazing 6-year-old, 1st-grade student who was thrilled to be able to return to in-person learning in January once he was vaccinated. He actually cried when MCPS announced a snow day, because he would rather have started in- person. He was also born with Spina Bifida and is immunocompromised. 

“Your decision today could force my family to make an impossible choice to risk Jackson's educational progress or knowingly send him to an unsafe learning environment. Removing universal masking would violate Jackson’s and other students' rights to a free and appropriate education under the Individuals with Disabilities Education Act. 

“When removing mask mandates in public schools, what are your plans for preventing the segregation of special education students? We don’t want Jackson to be relegated to a separate classroom simply because he needs to mask. He deserves full access to safe, in-person education as well. What are your plans for keeping special education students medically safe? Will MCPS require COVID-19 vaccinations for all students, faculty & staff, just as it requires other vaccinations now? 

Keir: 

Keir and his daughter [image description: A father with light skin and short red hair, mustache and beard, poses with his daughter, who has light skin and black hair pulled back away from her face. She is giving a thumbs-up sign and smiling with her tongue curled out to one edge of her lips. The dad has a big, open-mouthed grin. They are posed in a family home with white and yellow walls.]

“My 7-year-old daughter is typical in so many ways -- she enjoys watching PBSKids and playing Minecraft with her brother. She was also born with chronic medical conditions affecting her airway, lungs, heart, and kidneys, and is one of the millions of people in this country who are immunocompromised and at higher risk of severe disease or death as a result of COVID.  

“Let us remember that while masks provide some level of protection to the mask wearer, the primary benefit of universal masking is in the protection it provides to others. That is why my daughter's doctors have advised, in determining whether it would be safe for her to return to school, that a primary consideration would be the degree to which others around her are masked.  

“I promise you, nobody wants this pandemic to be over more than immunocompromised people and their families. We have borne the brunt of this pandemic in terms of mitigating risk and isolating ourselves. But while many may be ready to declare themselves ‘done’ with the pandemic, immunocompromised children do not have that luxury. Not yet. We need the help of our community to keep immunocompromised children safe.  

“I appreciate that this is a difficult issue with strong feelings. For me, it's relatively simple. If schools maintain masking, as they have done all year, my daughter can return to school -- a place that she LOVES -- safely. If universal masking is eliminated, she can't. My daughter's education matters. Her inclusion matters. And I ask that you consider that as you vote today.”  

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Peter Witzler and Keir Bickerstaffe are members of Little Lobbyists. They live in Maryland.

Agata’s son enjoying time at the lake. [image description: In the lower right corner, a young boy sits with his back to the camera. He has light skin and short blondish hair. He is looking out over a lake surface that is rippled and dappled with sunlight. There is a branch with small green leaves in the lower left corner, and there are tiny water snakes in the middle of the photo.]

As the mother of a medically complex child, I was stunned by a recent Facebook post by a scientist friend who is cautiously advocating for dropping mask requirements in schools. He’s posted the recently released “Urgency to Normal” toolkit. My friend reminds us that he “was all-in at the beginning,” that he even got heckled at a school board meeting when he defended mask mandates. But, he says, he’s not sure he would push for school masking now. 

I’ve lived through the pandemic in Indiana, where many people refuse to wear “face diapers” and spread conspiracy theories about “plandemic,” horse dewormers, and microchipped vaccines. County councilmembers advocate against vaccines. Indiana’s vaccination rate hovers just over 53%. My county has a 47% rate. In Montgomery County, where I live, masking in schools seems to be the only mitigation tool we have, since our shops, restaurants, and churches are crowded and mostly unmasked and unvaccinated.

My scientist friend writes that Omicron is both more contagious and milder than previous variants. There’s only weak evidence for masking in school settings, he says. Everyone 5 and older has had a chance to get vaccinated, and the risks for younger kids are minimal, he says.

But what about children like mine? Those who are medically complex? Those who are disabled? Those too young to be vaccinated? What about the most vulnerable among us, the immunocompromised or those with comorbidities? Is masking properly in public places too much a sacrifice for the community as a whole to protect the most vulnerable during future Covid surges?  Scientists say Covid won’t be going away any time soon.

I am struck by the toolkit’s lack of consideration for people like my child. The name of the advocacy group itself, “Urgency to Normal,” has a eugenicist tone. I find the “healthy children don’t have to worry” rhetoric troublingly unconcerned with children who cannot rely on their own immune systems. The toolkit’s authors don’t seem to consider questions of equity in terms of disability.

I, myself, grapple with the implications of face coverings for children who have hearing impairment and those learning to read and speak. This is why I am advocating for nuance rather than rigidity or a one-size-fits-all approach to Covid. 

Agata in the classroom. [image description: A woman with light skin and short blond hair wears a black jumper over a teal long-sleeved shirt. She has a large orange scarf draped around her neck, and she wears large bronze-colored earrings. She is gesturing toward a large chalkboard in the background.]

Why not change masking requirements on a school-by-school or county-by-county basis when community spread reaches, say, a 10% threshold? According to the CDC, that’s a “medium” transmission rate. However, the CDC only recommends schools require masks when the transmission rate is “high,” which is a 20% transmission rate–and CDC rates are linked to hospital admissions and capacity. As we know by now, hospital admissions are not the earliest indicator of high community transmission rates. A “medium” transmission rate more accurately reflects high community spread. We also ought to consider wastewater testing and comprehensive school-based testing as  important triggers for mask requirements.

Many people are concerned about students who are learning to read, or teachers in classes with hearing-impaired students. Removing masks puts these students at risk during high transmission periods. Schools should invest in the many anti-fog, clear panel masks now available. 

We don’t have to follow rigid guidelines, but we need to take into account the safety and well-being of all students, including the large portion of them who are immunocompromised. Are deaths or the real threat of long Covid among young  children,  people with disabilities, and immunocompromised persons admissible collateral damage in this “Urgency to Normal” drive? Shouldn’t the toolkit’s authors wrestle with such complex issues, too?  

If more people were properly masked in public spaces, children and adults with disabilities could participate in society without fearing for their lives. Since this is not happening, let’s focus on safety in schools, one of the most essential places for our children to thrive.

Disability activists fought for a redefinition of “normal” even before the pandemic to make our society inclusive of those with impairment. It’s time we collectively address what “normal” means, whom it excludes, and why we’re ok excluding large groups of both vulnerable and valuable people from taking part in public life. 

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Agata Izabela Brewer is a Polish-American scholar, writer, teacher, and activist. She chairs Immigrant Allies, a branch of Humans United for Equality, a non-profit organization in Indiana. She is also a Court Appointed Special Advocate.

Sara Bean Staggs (l) & Emma Staggs (r) [image description: Two young girls with light skin and blonde hair stand against green bushes. They are each wearing “Future Health Care Voter” t-shirts and blue jeans.]

When students were sent home from classrooms in March 2020, our public education workforce burned the midnight oil to execute a monumental set of tasks. While the outcomes varied by state and district, there was a feeling of community pulling together through the noise, uncertainty, and fear in the early days of the pandemic. We called educators and health care professionals heroes! We clapped in unison, sent meals, and heaped much deserved praise on our public education workforce.

Twenty-two months later, we’re crumbling under another surge of the COVID-19  public health crisis, and many schools are being forced to close again. Other schools are remaining open, but without the appropriate strategies in place to keep kids and staff safe, preventing more vulnerable kids from being able to access education and further contributing to the pandemic’s surge. After so much time has passed it feels like we are no better off than we were at the start of the pandemic and no one knows where to go from here.. 

Like millions of students across the country, Little Lobbyists Emma and Sara Bean (my twin daughters) will begin their 5th semester of virtual learning. Time after time, I have circled dates on our calendar with the hopeful expectation of safely returning to the classroom, only to cross them out and hope for a date in the future.

Just last week, U.S. Secretary of Education Miguel Cardona spoke with CBSN about the importance of in-person learning and highlighted a number of recommendations that have yet to be implemented at the district-level, while saying he supports “safely reopening” classrooms. I wonder if he and his team are aware of the barriers to testing supplies, universal masking, and high rates of eligible adults and children who remain unvaccinated? Although Congress allocated funds to help schools become COVID-safe in the American Rescue Plan, the reality is that most schools have not yet achieved these basic goals.

As my friend Megan Carmilani, founder of Long COVID Families noted, “Saying, ‘We need to keep schools open,’ is not a plan to keep schools open.” When do we stop talking and start listening to those on the front lines? 

Sara Bean Staggs participating in remote learning. [image description: A young girl with light skin and blonde hair sits at a beige cushion. She is pointing to images on an iPad that depict math problems.]

We need to listen to our educators. In my district, teachers want increased community support, Covid-safe working environments, increased pay that matches their abilities and credentials, and to be a valued voice in decision-making. 

We need the Administration to recognize that schools are not yet safe, especially for our most vulnerable students, and to support flexible options and accommodations, including high-quality virtual programs. 

We need every school to implement what we know works to control Covid-19 in our classrooms, including consistent and appropriate universal masking (with access to high filtration masks for all), improved ventilation in school buildings across the country, required vaccinations for all those eligible, and a return of paid Covid-19 sick leave for caregivers.

How many lives lost or changed are we willing to endure before we turn toward actionable solutions? Pick a number, because we’re likely to reach it before the smoke clears. The pandemic isn’t over just because we’re tired of it. We need to come together once again to reimagine and reshape our public education to be more inclusive, flexible, multifaceted, and adaptable to shifting realities.

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

Myka holding her vaccine card. [image description: A light-skinned girl with shoulder-length blond hair holds up her vaccination card. She is standing outside a chain drug store, with signs on its windows. She wears a striped t-shirt and denim shorts.]

September 24th felt like an eternity away. September 24th was my daughter Myka’s 12th birthday. We began counting down to her big day the minute the CDC, last May, approved Covid-19 vaccines for kids 12 and up. Myka, the youngest of my three kids, is the only unvaccinated person in our family of five. Although she went back to school full-time, in-person while masked up, we knew that every day she left our home, she would be exposed to many elements but none as worrisome as Covid-19. 

Myka was born with an undiagnosed congenital heart defect, and we were told by her team of doctors to vaccinate as soon as we were able. All three kids are very active--Myka has been involved in Girl Scouts, ice skating, aerial and now volleyball for many years--so we knew being careful, masking up, and vaccinating our entire family would be the best way to protect Myka until she herself was able to receive hers. 

It wasn’t easy to wait. We walked a fine line of allowing our kids the opportunity to be kids and maintain their active lifestyles of playing sports and competing, attending school and school functions, and seeing their friends. We knew we took a risk each time they left the house. In the beginning, we felt all those around us in our community were on the same page until they weren’t. Our schools required masks to begin the new school year but this was not received well and many local and vocal parents combatted this at school board meetings each month. It left us feeling extremely vulnerable and alone.

We kept Myka as well protected as we knew how. Many times we had to say no to a Girl Scout outing or a friend activity, devastating our daughter in the meantime, but knowing it was in her best interests. We simply wanted to get to her 12th birthday.

The morning of Myka’s birthday, I logged on to finally schedule a vaccination appointment for her. I would waste no time. As I drove my older boys to school, tears began to well up. My very wise 14-year-old son noticed my emotions and said, “You’re crying tears of relief aren’t you?” Yes. Yes, I was. The overwhelming weight of worry had been removed from my shoulders. Although she would not be fully protected for another 6 weeks, I knew having that first injection would make all the difference in our family’s fight to keep her safe. 

As we hear word that vaccines may be approved for 5 – 12 year olds very soon, I beg parents to hold on just a little bit more. We’ve all held on for so long, waiting and hoping for our children to be protected from Covid. We’ve endured challenges to our children’s schooling, friendships, and activities. We’ve surfed the mask wars in our communities. Hope is on the horizon.

The debilitating worry can be overpowering at times. Understand this, you are not alone. 

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Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists.

Stock photo. [image description: A young boy (left) with pale skin wears a blue surgical face mask and yellow shirt and carries a royal blue backpack. He elbow-bumps a young girl (right) wearing an identical face mask who has pale skin and braided hair. She wears a blue-striped shirt and carries a pink backpack. The two stand in front of a school building.]

Joyful, silly, and smart are words my husband and I would use to describe our six-year-old son. He is a child who knows no stranger, genuinely loves everyone he comes across, and is obsessed with cars. The world is his oyster, and he loves being an active participant in life! He loves to play, explore, and tell knock-knock jokes--his favorite being one about an interrupting chicken. 

If you were to meet our son, you would think he's a typical child, but on the inside his windpipe and bronchial tubes are partially collapsed all the time. They collapse 100% when he coughs. Our son has a "hidden" disability called Tracheobronchomalacia. It is a rare and incurable airway disorder that can potentially be relieved, but not cured, by a series of highly specialized and complicated surgeries. 

As I sit in a dark, cold, and cramped hospital room writing this while also watching machines read out a myriad of information during my son's third sleep study in his six years of life, I wonder what it must be like to have a “typical” child. It must be freeing to not sit and stare at a pulse/oximeter all night when your child has a "little cold" or watch to make sure your child's chest rises and falls, not because that's "what all parents do" but because there's a very real possibility that your child has completely stopped breathing in the middle of the night. 

My son doesn't just get a two-day cold, he gets a two-week cold because of his airway disorder. This means that every little cold he gets is trapped deep down in his lungs and turns to pneumonia. Now imagine having a child with this condition during this global pandemic and you can maybe emphasize with a fraction of the terror we feel daily in making basic decisions like, should my son go play outside with friends? 

Other than chronic lung disease, during COVID there have been no limitations on my son’s ability to participate in school or extracurricular activities, except one: he must be around others that mask to protect his airway. This means when a school has a universal masking policy for the classroom, but fails to require masking during gym, music, recess, after school activities, and has little-to-no mitigation strategies during lunch, a child like ours has to sit alone in an alternate space to eat. He has to sit alone in his classroom during gym and music and watch a simulcast of his classmates having fun. To add insult to injury, his parents are told after school activities hosted by the PTO are "not a good fit" because masking is no longer required. Each of those things is a daily reality for our kindergartener. But why? 

Last year our school district, Indian Hill Exempted Village, did a remarkable job of keeping children, faculty, and staff safe all year. It never shut down once because of its strong masking policy and mitigation strategies. But now, despite a more highly contagious variant of Covid circulating, our district is suddenly dropping all those tried and true mitigation measures. Why? 

Does my child’s school truly value GOP political pressure over the lives of their students, faculty, and staff? That's certainly how it feels from our perspective. 

And then there is the option of virtual schooling. If you were told your child could either learn in-person (studies have shown that it is a healthier environment for success), or stay at home with no social interaction, learning only math and reading, what would you choose? Forcing a child to have an inequitable education because of a medical condition or disability is both unacceptable and illegal.

The one thing that can protect our son, and so many other children like him, is the small “ask” of wearing a mask at all times indoors. That's it. If all his classmates wear a mask in gym and music, our son can finally participate fully in school without risking his life. If all his classmates wear a mask in the classroom, he can receive the equitable education he is entitled to. 

That's it, just a mask. Just a mask until he and all children under 12 are able to receive a vaccination. A piece of cloth to save a life. How could that even be a second thought for anyone? 

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The author of this important message on children's public health requested anonymity because of recent death threats individuals advocating for school masks in their area have received.

Payton (center) with her dad, Randal (left), and her mom, Kristen (right). [image description: A dark-skinned man in a navy blue shirt holds his daughter, who had tan skin and is wearing a pink dress and a pink and white hair bow. The girl’s mother, a white-skinned woman is to the right with long straight brown hair and glasses.]

As our last school year ended here in Florida, I was feeling optimistic about the summer and hopeful that with the widespread availability of Covid-19 vaccines we were at the end of this pandemic. My daughter Payton is seven years old and has just finished kindergarten. She loves dancing, being tickled, listening to music, watching movies on her iPad, and playing with friends. Payton has attended public school since she was three years old, despite having a tracheostomy and feeding tube. She thrives in public school around her peers; it is where she learns the best. 

Our summer went well. We took several vacations and were feeling good about the state of Covid. Then the case numbers started to rise. I anxiously awaited our school district’s plan for the fall semester. I assumed that, based on our district's response last year, masks would be a part of its plan along with other precautions. Then I heard Governor Ron Desantis' statement about school re-opening and read his executive order, which states that schools can lose funding if they enact mask mandates. I was in shock! I couldn’t believe what I read in the executive order; it sounded like a rambling Facebook post, not something from the governor of one of the most populous states in the country. 

I emailed my Florida State Representatives, the Florida Department of Education, and Governor DeSantis with my concerns, but I was worried my complaint would fall on deaf ears. So I went to our school board meeting to share my daughter's story to explain why we need masks. When we wear masks we protect those who cannot wear masks. I pointed out that the devastation from Covid-19 is not limited to death, but has also left many with permanent disability. I requested a minimum nine-week mask mandate. 

Scientists and physicians from our community also came to speak at the school board meeting. They attested, overwhelmingly, to the efficacy of and need for masks when school starts. They shared that the Florida medical system is currently overburdened with Covid patients. Our two primary hospitals have stopped all elective procedures. 

Our school district ultimately decided to do a two-week mask mandate and see what orders came from the state. There seemed to be no question that the district wanted a mask mandate, they were just in fear of losing much-needed funding if they did the right thing. But I knew that this fight was not over. 

I had been very vocal on social media and with our local news outlets after the school board meeting. As a result, I was sent the names of two attorneys who were planning to file lawsuits: one strictly on the grounds of the Individuals with Disabilities Education Act (IDEA) violations, and the other for all children, regardless of disability. The attorneys bringing the suits are alleging that under the IDEA, the governor’s refusal to let school districts implement mask policies is a violation of disabled students’ rights to a safe school environment. 

Payton (right) with her dad (left). [image description: A dark-skinned man wearing a knit cap and brown plaid shirt holds his young daughter, who has tan skin and is wearing an aqua jacket. She is looking at bright stained-glass windows.]

I reached out to both lawyers and my family was named as a plaintiff in each lawsuit against our governor, the State of Florida, the Florida Department of Education, and individual school districts.  

Our family has been told to do virtual school in Facebook comments, and one of our school board members suggested home/hospital instruction. However, people who say these things clearly do not understand the unique needs of children with disabilities. Payton does not learn well virtually. She receives a specialized education by professionals specifically trained to teach children with intellectual disabilities, and she also receives numerous therapies at school. Payton received hospital/homebound instruction once after scoliosis surgery; we learned then that this type of instruction is not adequate to meet her needs.

Payton deserves to receive an education in the least restrictive environment, in accordance with the IDEA. For Payton, that is her in-person school classroom. We are not going to remove her from in-person education simply because some people selfishly refuse to wear a mask and follow basic safety precautions. We are going to fight for her right to attend school in a safe environment.  

When I think about our Governor DeSantis, Florida public officials, and many of my fellow citizens who are advocating so strongly against masks and other precautions, I am almost envious of them, because clearly they have never had to worry over a sick child. If they had, they would want every layer of prevention to protect their child. 

During this pandemic, we could have been teaching our children to love and care for others--that we can do small things to protect others--but we aren’t. If we made an effort to do that, it would easily be the greatest example of selflessness we could teach them, an example in which our actions speak louder than our words. 

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Kristen Thompson is the parent of Payton (7) and Bailey (3). She lives in Gainesville, Florida. Kristen has been an advocate for children with disabilities since her daughter Payton was born with Trisomy 18. Kristen has completed the Partners in Policymaking program through the Florida Developmental Disabilities Council. She serves on several advocacy boards and volunteers with several organizations. 

Myka, still waiting for a vaccine [image description: A white tween girl with shoulder-length brown hair poses in front of her red front door. She wears jean shorts and a red t-shirt with a cartoon image of a suffragette holding a “Votes for Women” sign and standing on a platform with the words, "Susan B. Anthony Suffragette.”]

The CDC just recently lifted the mask mandate for those of us who have been fully vaccinated. Hurray! The moment we all waited for, right? Except that for some of us, our medically-complex, under-12-year-old children are still at risk every day in this Covid-19 world. 

We trusted the school districts and our community to protect our children. We sent our kids back to school because we knew their classmates and teachers would be masked up. What happens to these kids who are not quite old enough to receive the vaccine, but are at added risk? Adults around them are maskless. Kids around them are maskless. Parents like me are still living in fear that their child can contract Covid-19. 

My daughter Myka has weathered the pandemic with grace. It’s not an easy task for an 11 year old who is so full of life and active in so many ways, from Girl Scouts to ice skating to sleepovers. And, then, it all came to a crashing halt just like it did for millions of kids all over the country. But, for this family, we knew what was at stake for kids like Myka who live with medical complexities every day of the year. The sacrifices we made as a family were to protect her and other kids in our community who were, and continue to be, Covid high-risk. 

Children now account for 22 percent of new Covid-19 cases. For some of these kids, mine included, Covid can bring about severe complications. For example, every state has reported instances of Multi-system Inflammatory Syndrome (MIS-C) as a result of Covid-19 infection in children, which can cause life-threatening inflammation to the heart, lungs, other major organs, and can also cause neurological issues. 

What are parents to do? Continue to mask up. 

But more than that, we need others in our community to help us protect our children until a vaccine is ready for those under the age of 12, maybe even this fall. It’s only a few more months, so ask your family and friends to continue to mask up around your child. Talk to your teachers. Talk to your doctors. Talk to your principals. Keep wearing your mask when you shop, dine outside, and gather with family or friends who have not been vaccinated. Share your stories and ask that others respect your choices and help you protect your child. 

But mostly, ask your friends or family who are on the fence to get vaccinated! Please do not leave us behind as the country begins to reemerge from Covid-19. We are in this together!

Our medically complex and disabled kids are fighting some big battles. The least we can do is help them by masking up. Continue to be an ally and help them get to the Covid finish line along with the rest of us who have been vaccinated! Wash your hands. Use hand sanitizer. Be thoughtful. Help us protect our kids and our communities.

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Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists.

Rob and his mom at the U.S. Capitol [image description: A woman wearing a black trench coat kneels next to a young man, seated in a wheelchair, who wears a an orange and black wheelchair cape. The U.S. Capitol is in the background]

In 1998, when my son Rob became disabled at the age of one, I knew nothing about disability services or advocacy or rights. I just knew that I wanted Rob to live at home with us, where any child belongs. Rob was a busy toddler who loved going to the zoo, reading stories, watching Teletubbies, and he absolutely adored Buzz Lightyear.  

Then, over the course of a long weekend, Rob went from 60 mph to 0, due to a sudden-onset genetic condition. After that, Rob could no longer speak, stand, sit or walk by himself. He needed all of his food, hydration, and medication delivered to his stomach by tube. Rob required specialized formula, medical supplies, and equipment. He needed a wheelchair, communication devices, and coverage for his many surgeries and hospitalizations. 

But one thing had not changed - I wanted a good life for Rob: to live with dignity and respect in his community, to attend the public schools and to participate in the same activities that other kids did. Unfortunately, I had no idea how to make that happen. Even a close family member asked me if we’d ever give Robert up. “Never,” I replied.

The answers were Home and Community Based Services (HCBS) and Long-term Supports and Services (LTSS): Medicaid “waiver” programs. “Waiver” means those who qualify don’t have to spend down their assets to ensure their loved ones stay out of institutions and remain in their communities. HCBS helps infants & toddlers, school-aged children, and teenagers & young adults. LTSS assists adults with disabilities through their senior years.

President Biden’s American Rescue Plan includes funding for vital HCBS, and, thanks to House and Senate Democrats, that funding that keeps our kids in their communities is in the bill moving through Congress. HCBS COVID relief includes additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. House of Representatives will vote on the American Rescue Plan at the end of next week, and then the legislation moves on to the U.S. Senate for budget reconciliation, the measure congressional Democrats will use to pass it.  

You can help by contacting your representative and contacting your senator to thank them for including our children’s needs in the American Rescue Plan, and asking them to keep it in. Let them know: 

1. Why we need to reduce waiting lists for Medicaid waivers. 

Despite Rob’s complex medical needs, he was on waiting lists in Maryland for close to a decade--as are many children, right now. Private insurance does not pay for all the home medical services that Medicaid provides. 

All U.S. states have Medicaid waivers for children. Many have adopted a specific child waiver known as a Katie Beckett waiver, named for the little girl who, in 1981, inspired Ronald Reagan to request the first changes to Medicaid that allowed children like Katie to leave hospitals and come home. Yet, across the country, states have a limited number of slots for these waivers, with many children on waiting lists, or “registries,” so the promise made to Katie Beckett is not yet a reality for thousands with complex medical needs and disabilities.

2. Why we need crucial funds for home health care workers and direct support professionals, including wage increases and PPE. 

HCBS and LTSS also pay for personal supports that private insurance does not cover. These include home nursing and health aides. In addition, HCBS programs provide direct support professionals (DSPs) to help people with disabilities look for jobs, attend college, and learn community living skills. 

 But how can our families hold onto staff, especially during the pandemic, when Medicaid wages are so low? Many DSPs are paid less than a living wage. Home nurses and health aides often make more in hospital-type settings. Our children cannot survive and thrive without these extra sets of hands.

3. Why we need an ongoing focus on the needs of people with disabilities throughout their lifespan. 

Rob is now 23 and benefits from two HCBS waivers in Maryland, receiving help from home nurses and inclusion aides. With this support, Rob can go to the movies (he loves Star Wars and the Marvel Comic Universe), or to Capitol Hill to advocate for his rights, or attend a community college class. 

But my family is still fighting for the LTSS supports Rob will need to keep him out of an institution as he ages, and we’re not alone. Medicaid is a state/federal program, and HCBS and LTSS programs are options states can choose to establish; they are not required. Many Medicaid programs are chronically underfunded. Some states do not use the full range of federal Medicaid benefits to serve their populations. As a result, many children and young adults with disabilities are still forced into institutions, nursing homes, and intermediate care facilities. 

In 1990, seven years before Rob was born, President George Bush signed the Americans with Disabilities Act (ADA), which created, most visibly, wheelchair ramps and curb-cuts, as well as many other rights and accommodations for people with disabilities. 

One year after Rob became disabled, in 1999, the U.S. Supreme Court settled the case Olmstead vs. L.C., aka, “the Olmstead Decision.” Based on rights the ADA established, the Court ruled states could not segregate people with disabilities in institutions. States must instead provide community living supports to those who want them. 

We must think of HCBS as a work-in-progress and build upon the vital work of disability advocates over the last 40 years. We hope to inspire more advocacy on your part. Let’s make the world a better place for our families!

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Jeneva and Rob Stone live in Maryland. Rob lives at home with his mom, dad, sibling, and two cats and a dog. He is a disability rights activist and a member of Little Lobbyists. Jeneva is the Little Lobbyists blog manager and a writer.

Rob Stone, 23, after his vaccination in mid-February. The process wasn’t easy, but he got lucky. [image description: In a classroom, a young white boy with dark curly hair wears a white face mask over mouth and nose, and a purple surgical mask over his trach tube. He sits in his wheelchair wearing a baby blue wheelchair cape which has a round sticker that reads, "Kickin' Covid's Butt! I was vaccinated," and a green cartoon virus particle below.]

In ordinary times, my son Rob is a thriving member of his community, a disability advocate, a local theater volunteer, and more. Rob also has a tracheostomy and compromised lungs, takes his meals through a feeding tube, and relies on a wheelchair to get around. If Rob contracts Covid, he is at high risk of severe illness and death. 

Despite the strict precautions we took as a family, Covid-19 came to our home in mid-January. First my younger child caught it, then my husband. Each of them immediately quarantined. Many of Rob’s nurses were reluctant to come in, and, like the cheese in the nursery rhyme, I stood alone as the sole remaining family caregiver for Rob. For 10 long days I worried I might, indeed, contract the illness. And who would take care of Rob if I succumbed?

Terrified, I contacted the two state Medicaid programs through which Rob receives services. Because Rob requires skilled nursing, one of the programs couldn’t help at all. The other told me I would need to take my son to the nearest emergency room for a “social intake,” which would require me to admit I was abandoning my son. I could have been charged with a crime, and Rob could have been institutionalized for no less than three months.

Fortunately, this did not come to pass. Perhaps I was shocked into remaining well until my husband came out of quarantine and Rob’s home nursing schedule again became consistent. 

Neither Rob nor I contracted Covid-19. But our struggle made clear the reality that states have no contingency plans for medically complex and disabled dependents, should the worst happen during this pandemic. And yet states have been slow to vaccinate people with disabilities, their paid caregivers, and their unpaid family caregivers. In the case of children with disabilities under the age of 16, no vaccine has yet been approved. 

In Maryland, we discovered that unpaid family caregivers had not been included in priority group 1, along with other medical providers as had been done in several other states. Unpaid family caregivers are our children’s last line of defense during the pandemic. Many of us have forgone nursing and other home services in order to limit COVID exposure many more do not even have home and community supports due to long state waiting lists. 

COVID vaccine rollout and priority groups are determined at a state, and even a local, level. To address this problem in Maryland, along with other Little Lobbyists families, Laura Hatcher and I took action, composing a letter to Maryland’s Acting Secretary of Health to request that our families be included in that frontline priority group. We have not yet received a response, but are hopeful that we will.

What can you do in your state? First, check your state’s vaccination website for the most up-to-date information (it changes frequently). Contact your state legislators if you need additional assistance locating that information. You can also take a look at this Johns Hopkins vaccine tracker for people with disabilities. 

If your state has not yet included unpaid family caregivers for priority vaccination, here are  some coordinated actions you can take to make change: 

1. Connect to other families and advocacy organizations in your state through social media, including Little Lobbyists, The Arc, your state disability coalition, and other groups of which you may be a part. 

2. Draft a letter to be sent to the state official responsible for the vaccine roll-out in your state. If you don’t know who this might be, go to your state’s vaccination site and find that name. (You can find some template language at Little Lobbyists’ vaccine statement here.)

3. Circulate your letter among the disability advocates and organizations in your state--these include state disability coalitions, Arc chapters, and other disability-focused groups. Ask for feedback. Ask them to sign on to your letter. A united front changes minds.

4. Send your letter as soon as possible. Then ask your families to contact their state legislative delegation, tell their story, attach the letter, and request that their legislators contact the state health department. 

5. Follow-up! Don’t give up!

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Jeneva Stone is the Little Lobbyists blog manager. She is a writer and mother of Rob Stone, who is a disability rights and health care advocate, as well as a poet and an artist.

Erin’s three children: Collin, Abby, and Bridget. Collin has short blond hair and wears sunglasses and a gray t-shirt. Abby and Bridget have their blond hair pulled back, and each wears a purple t-shirt with pink lettering that says, “Sister of the Year.”

My name is Erin Gabriel. I live in Beaver County in Western Pennsylvania with my husband and three children, Collin, Bridget, and Abby. 

My youngest daughter Abby is a beautiful, fun, mischievous ten-year-old who loves playing with her big sister and brother, going to the theater, exploring the outdoors, and, of course, all things Disney. 

Abby is Deaf-blind, autistic, and has a rare progressive neurological syndrome affecting multiple organ systems. She is considered high risk should she contract Covid-19. 

Today marks 189 days since Abby has been inside any building that is not our home. It has been 193 days since she has been to her beloved school. Summer vacations, playdates, outings, travel plans to visit grandparents--they’ve all been canceled. 

Last month, we had to make the difficult decision to officially pull Abby out of her school--the place that’s become her community over the last eight years--and homeschool her. She, like many children with disabilities, simply cannot access a virtual education, and it's not safe to send her back into a school building while this virus is spreading. But Abby misses her school and her friends.

In normal times, ongoing speech, occupational, and physical therapy help Abby to keep the progress she has made learning to walk, eat and swallow, and communicate. But, with Covid-19, those therapies have all come to a halt. It’s just not safe. 

Abby’s syndrome is progressive. She will eventually lose much of what she has gained, and we are already watching some of that play out. Her seizures will return and intensify. Her muscles will weaken and her spine stiffen. As her disease progresses, we know that she will need more intensive medical care. Attending school and receiving in-person therapies is one way that we try to stave off that potential progression, and I worry about what she stands to lose by not being there right now. 

She has been robbed. Robbed by an Administration that not only failed to act, but blatantly lied about what they knew. Robbed by a President more concerned with his own poll numbers than with the numbers of infections and deaths in our communities.  

And while the President is forcing schools to open without regard to safety, and even encouraging my neighbors to skip the mask, he is also in court trying to repeal the Affordable Care Act (ACA): Trying to take health care away from millions of Americans in the midst of a pandemic. 

All three of my children have disabilities. They rely on the protections of the ACA to access care. Like any child, my kids also have health needs outside of their disabilities. For example, kids fall off their bike and break bones, or sometimes they catch a baseball with their face instead of their glove. 

Life happens. Even during a pandemic. 

When my son Collin was 12, he had sudden and severe abdominal pain. So bad, in fact, that we took him to the emergency room at Children’s Hospital. As a disabled child, he had both private insurance and Medicaid, so I didn’t need to hesitate and contemplate the cost of the visit. As it turned out, Collin had appendicitis. If we had waited another day, his appendix would have burst, a much more dangerous situation. He was admitted and his appendix removed. 

Later that week when he developed complications, we went back to the emergency room, worrying only about my son’s health and not about how we would pay for groceries afterwards. Without Medicaid, we would have hesitated, and far too many families are forced to do just that--they second guess themselves, worried about the cost, and delay treatment. 

In this time of great uncertainty, our families--all of our families--need the certainty that they can access health care without losing their home. Instead of offering that certainty, the President is in court trying to rip health care away from millions. 

Our kids are missing out on so much of their childhood right now. And instead of acting to mitigate this virus in our communities, instead of showing true leadership, the Administration is trying to force schools open without adequate safety measures, all so President Trump can perpetuate a myth of normalcy in the midst of deadly chaos. 

This was all preventable. It didn’t have to be this way. Our children deserve so much better. 

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 Erin Gabriel is Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania. These remarks have been adapted from those Erin gave at the Protect Our Care Virtual Bus Tour on September 15, 2020.

“Back to school” has been my favorite time of year since I was a kid looking forward to new friends, activities, things to learn, and (my favorite) school supplies. As a mom, I still look forward to the promise and potential a new school year brings (and I still love buying school supplies).

COVID-19 has made this back-to-school season quite different. Instead of selecting lunch boxes and folders, parents and teachers are sorting through complex strategies for school “reopening” (in-person, hybrid, or remote?!). We’re asked to decide which is worse: risking our children’s health or their education? Instead of feeling excited, this year I’m trying to decide if I’m more terrified, or more furious. 

My son Simon loves to see his friends and teachers at school and push his walker to top speed in running club. He also has cerebral palsy, hydrocephalus, epilepsy, autism, vision and hearing loss, physical and cognitive disabilities. Simon depends on school for therapy and education. He needs in-person support to keep from regressing in every area. 

Like many of our Little Lobbyists, Simon’s health conditions put him at-risk if he’s exposed to COVID-19. He’s part of that “less than 1%” the President and his supporters cite as unfortunate collateral damage when they demand – with threats of defunding education – that we physically send our children back to school during a pandemic. 

Since schools have begun to re-open, almost 100,000 children have been infected with COVID-19. We’re learning that kids can become seriously ill and some do die. I would have hoped the avoidable loss of one child’s life, regardless of pre-existing health conditions, would be one too many for our president. But I was wrong, and I am terrified. 

I’m terrified because we’re being told by our Nation’s leadership that we must learn to live with a rapidly spreading pandemic, get back to work, send our kids back to school, and hope everything will be okay. I see people ignoring public health experts and I see the resulting outbreaks of contagion. On our current course, I’m forced to wonder how many empty chairs our families will have around the table this holiday season. 

Seeking guidance, I asked my family’s pediatrician about sending my kids back to school, and this is what he said – “Our country’s response to this pandemic has made us the laughing stock of the world. In our Nation, this public health crisis has been politicized to the point that even CDC guidelines on opening schools is a joke. We are on our own.” 

He added that we don’t understand COVID-19 well enough, or have the resources we need, to keep our children safe in schools. While many kids don’t get sick, some become very, very ill. We don’t know the long-term effects of this virus in our systems. Our states and our schools don’t have the basic resources they need for testing or contact tracing, nor PPE, nor even cleaning supplies. 

He acknowledged that parents are in a terrible spot. We must choose between our children’s education and protecting their health. Working families, families of color, and families of kids with disabilities should never be forced to make these impossible decisions. Our pediatrician added, “If your child is one of the ones who gets sick, or if they spread the virus to teachers or staff or other family members – will you be able to live with the choices you made and the risks you took?” 

For me, the answer is no. My child’s life and the lives of our loved ones and community members are precious. But for the President, his administration, and so many in the GOP leadership, the answer is “yes” – and so, I am furious.

I’m furious because it didn’t have to be this way.  Other countries have been able to contain the virus, control its spread, safely reopen and send kids back to school – but we can’t.  In the United States, infections are rising, ICUs are filling, and people are dying. Why did we shut down our country this spring if we were going to reopen before the virus was controlled - throwing in the towel as soon as the President felt it was hurting his poll numbers? 

I’m furious because during a pandemic, when families need secure access to health care most of all, the Trump Administration is still trying to overturn the health care protections of the Affordable Care Act in the Supreme Court – protection my family relies on. I’m furious because the House passed the HEROES Act COVID-19 legislation in May – which provides funding for school systems, COVID-19 testing and tracing, hospitals, unemployment, nutrition assistance, home and community supports for people with disabilities, and so much more – and Senate Leadership won’t even discuss it. 

I’m furious because doctors and scientists are being muzzled and disparaged, because the President told our country to ingest bleach while my kids watched on TV, because  – as my pediatrician said – at the moment we most need trustworthy, compassionate, and competent leadership to protect our families’ health and futures - we are on our own.

I hope we won’t be on our own much longer. As we face this crisis, though I am terrified and furious, I’m also determined. There’s a general election coming and I will vote like our children’s lives depend on it. Because they do.

Laura LeBrun Hatcher is Simon’s mom and Little Lobbyists Director of Design and Communications.

Our families are being confronted with the terrifying decision to send our kids back to school, risking their lives, or keep them home and miss critical instruction and therapy. The ramifications of these choices are mind-blowing. From learning to therapy to social integration, school is the cornerstone of community inclusion for our children. What will it take for our children to continue to survive and thrive with the educational landscape so radically altered?

Maya Brown-Zimmerman lives in Ohio with her son Julian, who has a great sense of humor and loves glitching video games. Maya has multiple lung diseases as a result of a genetic disorder, which complicates the back-to-school calculations.

Cassie Walker lives in Indiana with her son Bruce, who has a great sense of humor and makes the best cup of coffee for his mom! Such a great helper. Bruce will be attending school for the first time. 

Angie Voyles lives in Tennessee with her daughter Anna, who is the most caring person in the world--smart, funny, and loves everyone.

On a scale of 1 to 10, how worried are you about sending your child back to school?

Angie: Ten. Very worried.

Bruce, Cassie Walker’s son

Maya: Ten. I’m very worried. I don’t feel any better since seeing my pulmonologist last week.

Cassie: Ten. Extremely worried.

What does your child miss most about in-person school?

Angie: Anna misses the social aspects. She misses the school pizza. 

Maya: “Everything, but specifically speaking, my friends and teachers,” he says. Julian is a social butterfly.

Cassie: This will be Bruce’s first time in school. 

What have been some of the upsides and downsides of the online classroom? Can you see online education continuing indefinitely for our kids?

Angie: Upside--Seeing what Anna can accomplish. I’ve been able to see how she has benefitted from special services provided by her IEP. Downside--Me teaching common core math when I don’t understand it myself. I can see where IEP services are needed, even in a home teaching environment. I don’t feel online would be successful without some sort of implementations for children who require extra services. 

Julian, Maya Brown-Zimmerman’s son

Maya: So it’s been interesting observing this from a few different angles. I’ve got my medically complex son, and then I have two other kids who have developmental disabilities but no medical complexities. Online schooling actually worked pretty well for Julian. He could work at his own pace. We didn’t have to worry about germs, or teachers following his 504 (it’s almost all physical adaptations, like being allowed type instead of write). The negatives were that we didn’t receive any real instruction, just worksheets, and he missed his friends. My other two kids did get more instruction (either recorded lectures or live small group video chats), but they struggled with online education and their 504s/IEPs require being in the classroom to really get services, so that was the downside.

Our district is mandating a set schedule for live online instruction. The mock schedule they put out has kids K-6 logging on at 8:30 am and logging off around 2:00 pm, and later if they have one-to-one time scheduled with their teacher for extra help. There’s a 15-minute mid-morning break, and then an hour for lunch. I’m glad it’s better than “teach yourself some worksheets,” but that much screen time isn’t going to work for a lot of kids, and it’s a schedule that is difficult for working parents who were hoping to do school around their jobs.

Cassie: We have never done online classes, but I worry that Bruce will not be able to follow along and stay on a laptop for hours on end. Online classes do not seem like they were created with disabled children in mind. 

What proposals have you seen for returning to the classroom that make any sense?

Angie: None so far, but other local districts are offering kids either going back to in-person school or doing online services. I suspect our district will follow suit. 

Anna, Angie Voyles’ daughter

Maya: Our district has given a proposal: classes of about 20 kids, five days per week. The state just mandated masks for K-12, but, prior to that, our district was just recommending them for grades 3-12. Other nearby districts are doing class sizes of 10-15 students, which seems much safer (some will have all-virtual classes for the first quarter), and some districts have mandated masks from the beginning. I think hybrid models, like our district is doing for grades 7-12, are safer than every day. 

Cassie: I have not seen any plans for returning to the classroom that make sense at this time. 

What will it take for you to put your child on a school bus or watch them go through the doors of your local school?

Angie: I don’t know. Tennessee isn’t taking much in the way of precautions. I think I would feel more comfortable with a governor who would take things more seriously.

Maya: We are keeping the older two at home. We are allowing our child who goes to the district pre-K to attend because the classes are capped at 9 students and it’s 2 hours a day, 4 days a week. However, we took a long time making a decision about our incoming kindergartner. After a meeting with district staff, we have decided to send them, because we don't see another way for them to get the services they need. But I feel like I had to choose between their education and my health and I hate that. 

Cassie: At this point we’re probably waiting until a vaccine … or until transmission rates become so low that the chances of any of us catching Covid are minimal. 

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We’re all finding there aren’t any good answers to the challenges of school during Covid--what’s your story? What would you like to say to your governor? To your state and federal legislators? To the President? I really want to know! Email your story to me, Jeneva, and I’ll post it to our blog!

Olive wearing her mask

Dear Governor Parson,

I wanted to take a moment to respond to a recent interview you did regarding children returning to school during the COVID-19 pandemic. You stated that when kids go back to school they would get COVID-19 and they would all “get over it.” 

My daughter Olive is six years old and is supposed to start first grade next month. She absolutely loved kindergarten, especially being around her peers. Olive is considered medically complex. She has Cerebral Palsy, as well as complications with her airway and Reactive Airway Disease--all caused by a virus, mind you. Children with neurological issues are the ones dying from COVID-19. My child will not “get over it.”

On March 9th, we pulled our daughter out of school. That was two weeks before her district closed down; we followed the advice from our medical team. Olive has been at home with us since then.  She’s not been around her friends or extended family, not been to a restaurant or store since then. And when we do have to go out for doctor appointments, she wears her mask like a trooper. To keep a child isolated who loves other kids so much has been harder than you can imagine. You tout yourself as pro-life. Does my child’s life not matter?

As the Governor of Missouri you are expected to lead our state. During the pandemic I’ve seen very little of you leading and more of you following misguided opinions from other Republican politicians about COVID-19. You say that most people in the state are smart enough to figure out how to stay safe without mask mandates. Really, Governor? Because until very recently you were parading around the state without a mask in sight. We are fortunate to live in St. Louis where city and county officials are doing your job for you. Missouri is seeing an uptick in cases, yet we are one of the few states that doesn’t have a statewide mask mandate. 

Your remarks were so off-base and so callous. You said that all kids would get COVID once schools started back, but that we have to re-open schools. How are we as parents supposed to feel? What about teachers or school support staff? If you had taken action months ago, we could have been over this! Instead you sat back and did nothing, and expected us to risk our kids as collateral damage in your efforts to please the president. You have the opportunity now, four months later, to start acting like a leader and help Missourians out of this pandemic. It’s time to listen to science and medical experts and do your job. 

Put your mask on, Governor. 

Sincerely,

Julie Kauffman (Olive’s mom)

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Julie Kauffman is a new member of the stay-at-home-moms/homeschooling club, thanks to COVID-19. She lives in St. Louis with her husband, daughter, and two dogs. Her mission is to ensure the life her daughter fought so hard for is filled with inclusion, accessibility, and happiness.

Gabriel and his family

It defies logic that any human being would refuse a simple action such as wearing a mask which, however inconvenient, could prevent the completely preventable: passing a potentially deadly virus to a loved one, a friend, or a child like our Gabriel. 

Gabriel will be five in November, having long outlived predictions about his health. He loves the outdoors, floating in the Jacuzzi, and playing with his toys. His smile is infectious, and he particularly loves hanging upside down like a bat. Gabriel has a sweet and loving disposition that serves as a living lesson for others.

I often use “Pascal’s Wager” (a famous decision theory)  when weighing the options for substantive personal and professional choices. In the 1600s, French mathematician and philosopher Blaise Pascal wrote on the logical consequences of believing in God or Atheism. Simply put, one weighs the option of belief or non-belief, and the ultimate impact of being right or wrong in that belief. Pascal’s logic demonstrated that a failure to believe in God and being wrong bore the gravest (and most eternal) consequences, literally, Hell. Thus, we must consider, given any wager, gamble, or decision, if the belief or action is worth the wager. What are the possible outcomes, best and worst, of each choice, and how can we avoid the worst outcome?

With respect to wearing masks, the same argument holds. Let’s say that the worst imaginable outcome of wearing a mask is feeling uncomfortable, or a perception that the government has robbed you of your freedom. No credible evidence exists of any more negative effect than these, given that masks have been worn in the medical field for a century. However, the worst possible outcome of not wearing a mask is that Covid-19 can spread from your mouth and nose into the air and infect someone else. 

Even if you do not believe that masks will prevent the spread of Covid, you could be wrong--as humans are renowned for being infallible--and you are not God. Thus, even if your aversion to mask-wearing is strong, why on earth would you take the risk, the chance, the gamble with the life of another based on your worst imaginable belief when the alternative, wearing a mask, would not have as grave a result. Why take that gamble?

With whose life might you be gambling? Well, for one, our son Gabriel, born with an extra 18th chromosome, who is medically fragile. He has a tracheostomy and is oxygen-dependent, epileptic, and fed through a tube. A common retort we’ve heard is, “Well, keep him inside.” Yes, we do just that most of the time. However, he has medical conditions that, even with a mini-hospital at home, require us to take him for out-patient procedures. Even if he stays in, we do need to go out into our community to pick up his myriad medicines and treatments.

I’ve met a number of people who have been delighted by our choice to bring Gabriel into the world and devote 24/7 care to him, calling him an angel (which he is, in my opinion). Yet if you feel that the inconvenience of wearing a mask outweighs the prospect of his life, then your disregard for human life (and particularly the life of my child, with his beautiful spirit and warm smile) makes you the worst kind of hypocrite. Claiming to value  human life, then wagering that life due to your insistence on not wearing a mask (something infinitely less deadly, less cruel, less heartbreaking than the loss of my child) is shameful, arrogant, and the antithesis of “pro-life.”

Make no mistake: If you stand by your refusal to wear a mask in public (due to your skepticism of the value or legitimacy of wearing masks, your suspicions about governmental mandates, internet-based conspiracy theories about death counts, or your insistence on attributing American political motives to a WORLDWIDE and inanimate pandemic), you have chosen distaste for health and safety precautions over the life of my son and many more like him. Know that you have identified yourself as the enemy of the families of individuals like Gabriel, as well as the families of over 130,000 Americans who have died at the hands of Covid-19. When we all eventually emerge from the grip of Covid-19, I, for one, will never forget nor forgive such selfish actions.

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Gabriela Mafi is an educator who lives in California with her family. She is a member of Support Organization for Trisomy (SOFT), and Gabriel serves as a SOFT ambassador for expectant parents and young children.

Peter Witzler and family

We’re pleased to introduce a new series for the blog: “We’re In This Together” with our LL blog master, Jeneva (who’s also the author of our “Sharing the Journey with Jeneva” series). As parents, caregivers, and self-advocates who've struggled with unknowns, isolation, fear, stress, and more, we've learned a lot about adapting to and coping with what life throws at us. We've learned that human beings function best when we learn to rely on one another. We've learned happiness is always possible. We hope our experiences can help others cope with new challenges in the Covid-19 era. 

Peter Witzler, his wife Lisa, Teddy (8), and Jackson (5), live in Montgomery County, Maryland. He enjoys sharing his love of nature and food with his family, and brewing a new batch of beer with the East Rockville Brewers Guild. 

Tell me about your family. 

Summer is an epic time for my family. Our long running joke: We’re all part fish, so summer involves lots of time at beaches, lakes, and pools. Jackson and Teddy would spend all day in the water until their lips turned blue if we let them. During the winter, we love a good Marvel or Star Wars movie marathon in front of the fireplace for what we call a “Day of Sloth.” Jackson has a creative and adventurous personality, especially in his efforts to keep up with daredevil brother Teddy. Teddy has embraced his role as big brother and helper, especially as he enters 3rd grade as a “big kid.”

Tell me about Jackson’s medical needs and disabilities. 

Jackson was born with spina bifida and uses leg braces and a walker or crutches to get around. He uses a BiPAP machine at night because he has severe obstructive apnea. BiPAP stands for “bilateral positive airway pressure,” and the machine assists with Jackson’s breathing.

How did your journey with Jackson begin? What were your feelings? What kept your love for your child burning bright and fierce? 

Despite excellent prenatal care, Jackson’s rare form of spina bifida went undiagnosed throughout the pregnancy. The entire delivery room went silent when he was born, and our journey began. Without time to prepare and process our new reality, I felt the weight of despair and fear wash over me. These were eventually replaced with strength, resolve, and hope as we learned more about Jackson’s condition, began setting goals for his health, and committed ourselves as parents to fight like hell to give him the best chance possible to live his best life.

What were some of the new challenges in your life, and how did you learn to adapt?

My wife and I are planners and schedulers, so we had a plan for everything leading up to Jackson’s birth. We quickly learned the reality of an old military adage, ”No plan survives first contact,” and learned to let Jackson and his health become our north star. At the same time, we’ve had to continually adjust to our “new reality” as outliers. That status has actually strengthened our family bond, as we learn to love and live with each other in close proximity. Marching to the beat of our own drum has helped.   

How did you tease out joy in the midst of your most difficult moments? 

We learned to find the silver lining and humor in everything. Four weeks into our second hospital stay in three months, I remember looking at Lisa during one of Jackson’s diaper changes and saying, “Do you realize how much money we’ve saved on diapers?!?!” During hospital stays, diapers are provided as part of necessary medical supplies. 

Looking back at life with Jackson, what's your advice to other people trying to cope with the uncertainties of the pandemic?

We had to learn to take time for ourselves. It’s impossible to take care for someone else unless you’re taking care of yourself. For me, that meant finding time to go for a run and recreating Rocky training montages during our six-week stay at Children's Hospital of Philadelphia. Lisa found time to leave the hospital and get outside--fresh air does wonders! Caring for someone can be exhausting because you repeatedly displace your own needs for those of another, whether that’s providing medical therapies, or just helping your kid with a Zoom meeting for school (last week), or virtual camp (this week). 

It’s easy to get lax with routines and bargain with yourself about doing such and such later, or the next day. It’s also easy to get mad at yourself or feel guilty for not “doing more” with your time. To quote Admiral Ackbar from Star Wars, “It’s a trap!” You do, in fact, feel both ways: laid-back and guilty. I’ve developed a mantra for this: “Man, this feels crappy. It’s OK to feel crappy. And I won’t always feel crappy about this.” 

What’s your top advice for moving forward, given that the pandemic may not resolve itself soon?

When the pandemic started, we were, like, “I got this. This’ll be easy-peasy-lemon-squeezy.” I mean, we’d spent six weeks within the four walls of a hospital room; we could do quarantine at home. What’s been hard, though, as we move into phased re-openings, has been watching our friends and families break their quarantine bubbles and re-enter the world. We’re left on the sidelines. Jackson’s health and this virus are setting our parameters. We’ve had to re-calibrate what’s possible: We go on long hikes every weekend and spend loads of time outside during the week. Instead of going to the pool every weekend, we bought a small inflatable one for the backyard. Since I’m no longer able to travel for work, we decided to adopt a dog--something we’ve wanted to do for a long time. Instead of visits to the lake with family, we do Zoom, Facetime, and Google Hangouts. This summer we’re going to spend a month driving an RV to Mount Rushmore (to see Teddy’s namesake, of course), and Yellowstone and Glacier National Parks, channeling our inner Clark Griswold. 

What have you  learned about human interdependence, that we're all dependent upon one another?

I think we’ve all learned the importance of “me” time and recharging our batteries. Everyone gets a chance to chill out on their own (Lisa and I included). It’s been important for us to set some routines--we hold a “morning meeting” to discuss our day plan and involve everyone in decision making. We also try to “debrief” each day; each of us states their favorite and yuck part of the day. We are all in this together.  

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. 

All of us with medically complex children have good reason to fear the spread of the new coronavirus, COVID-19. Experts are right: Handwashing is the first line of defense against all viruses and bacteria. 

However, there’s “handwashing”, and then there’s real handwashing. Little Lobbyists “medical moms” like Lori Hensler know the difference, and here are her pro tips:

Tip 1: Just passing your hands under some water does not work. Wet your hands thoroughly. Use soap. A 20 second minimum = 3 verses of “Baby Shark” or one heartfelt belt of the chorus to “Jolene.”

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Tip 2: Wash the entire surface area of your hands. Pay attention to your thumbs, the back of your hands, and the very ends of your fingers. A few seconds spent smearing some soap around does no good. Consider a brush to help clean under your nails.

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Tip 3: Everything you touch after you wash renders your handwashing pointless. If you’re in a public restroom, use a paper towel to turn the faucets off and open the door if it’s one that must be pulled to open.

Tip 4: For the love of all things holy, do not use the wretched hot air hand dryers. They are germ volcanoes.

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Tip 5: Put nothing on the counter, door, or floor in a public restroom that you can’t dip in bleach. Put your purse around your neck. Stuff your phone in your bra or your pants pocket (preferably before you touch anything!).

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Tip 6: Handwashing is not just for post-restroom use or before eating. Wash your hands as soon as you come home. Make it a habit. Then you’re not contaminating your habitat with whatever you’ve picked up while you were out. (Also, disinfect doorknobs and light switches!)

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Tip 7: Essential oils don’t kill coronavirus. If you can’t wash with soap and water, use 60% or higher alcohol-based hand sanitizer. You can get nifty little bottles of it that attach to your keys or bag or purse.

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Tip 8: If you’re sick, try to avoid going out in public. Even if you wash your hands, you’ll be shedding viral particles everywhere you go from your mouth and nose. 

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Tip 9: SANITIZE YOUR PHONE. Think about where you set it down during the day. Think about how often you touch it after touching something else. Now sanitize it because it’s a germ magnet.

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Tip 10: Finally, all of us are concerned about runs on antibacterial wipes and hand sanitizer. You can make your own: Click here for DIY antibacterial wipes, and here for DIY hand sanitizer. 

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So welcome to Team #WashYourHands! It’s important to do it right on a regular basis to prevent the spread of colds, flu, and the transmission of other diseases. We hope you’ll keep it up after the coronavirus crisis is over.