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!

It has been three years since I co-founded Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities.  We formed because the health care that helped kids like my daughter Xiomara survive and thrive was under urgent threat.  Along with an incalculable army of organizations and advocates, we fought back and won.  I will never forget being outside the U.S. Capitol in the middle of the night with Xiomara, surrounded by hundreds of people, when the “skinny repeal” of the Affordable Care Act was defeated by just three votes in the Senate, thus (momentarily) saving our access to health care.  I was relieved. While I celebrated that night by hugging my friends and joining in some of the crowd chants, I also knew the fight wasn’t over. 

Unfortunately, I was right.The threats to the Affordable Care Act (ACA) have been non-stop and have come from every angle with long-lasting damage through the courts, ongoing Congressional repeal efforts, harmful regulations, and a proposed budget that cuts funding to life-saving Medicaid programs.  Without the ACA, 20 million people would lose their coverage, 135 million Americans with pre-existing conditions would lose their protections, and 17 million would lose the coverage they got through Medicaid expansion.

I think about what all this means for Xiomara.  She just graduated from Kindergarten and turned six recently, two milestones that I prayed for but was never guaranteed.  With access to quality care (and a bit of luck), she has come a long way since spending the first five months of her life in the Neonatal Intensive Care Unit.  Xiomara was born with chronic, complex medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to explore the world around her.  

While I am thrilled that Xiomara is thriving today, I am also worried because the access to medical care that has kept her alive is still under threat.  After failing to repeal the ACA in Congress, Trump and Senate Republicans have relied on the courts to do their dirty work for them.  President Trump made good on his promise to appoint judges who would overturn the ACA, and we watched Brett Kavanaugh, a nominee with a hostile record against those with pre-existing conditions and people with disabilities, get confirmed to the U.S. Supreme Court despite massive public opposition.  A federal lawsuit in Texas worked its way up to the U.S. Supreme Court, and we currently await the fate of the ACA. 

In the midst of a pandemic, the GOP-controlled Senate has likewise continued to confirm lifetime appointments for anti-ACA judges like Justin Walker and Cory Wilson.  These judges — some of them as young as 36 years old appointed to the federal bench for life— have the potential to make a lasting and devastating impact on Xiomara’s life.

As we celebrate the third anniversary of the defeat of the skinny repeal vote, we are also commemorating the 30th anniversary of the Americans with Disabilities Act and the 55th anniversary of Medicaid. These laws have made the difference in quality of life for so many, just as the Affordable Care Act has for my daughter.

And just like we did that night three years ago and every day since, we need to continue to fight back to protect our health care.  Please think about the courts, the ACA, Medicaid, health care, and my daughter Xiomara when you vote this November.

[IMAGE DESCRIPTION: photo of four Little Lobbyists families and two service dogs sitting on the ground in front of the U.S. Supreme Court steps]

Rob and his sister as children, waiting for the school bus.

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 answer is Home and Community Based Services (HCBS): Medicaid “waiver” programs established by each state. “Waiver” means, ironically, that the eligible person is waiving their right to institutional care, the very situation those with disabilities want to avoid. Medicaid, though, guarantees institutional care for those who qualify, while those who want HCBS are often put on long waiting lists. If a child qualifies, getting a waiver slot means that families don’t have to spend down their assets to ensure their loved ones remain in their communities, where they belong.

But these Medicaid services need funding, right now, to help families like ours. We need everyone’s help to reach our legislators. The Biden Administration has made providing additional funds to HCBS programs a priority, but Congress has yet to act.

In May, the U.S. House of Representatives passed a third COVID relief bill, the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, which would provide additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. Senate is just beginning their own discussions on a third COVID relief bill. You can help by contacting your senator and letting them know it’s critical that they include support for the disability community from the HEROES Act:

1. 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. We need crucial funds for home health care workers and direct support professionals, including wage increases and PPE. 

HCBS 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. 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 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 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. In future posts on HCBS and LTSS, we’d like to consider the following questions: 

1.     How can I keep my young child at home?

2.     How can I keep my school-aged child in their community?

3.     How will my child be able to grow up and live independently?

Ask your legislators about HCBS! Give them examples of how the world could be 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.

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.

Rico Winston and his son Israel

I am the proud father of an amazing little boy, created and designed by God, individually and perfectly, who has a diagnosis on the autism spectrum, and whose name is Israel. As a man of color raising a little boy of African ancestry who has a diagnosis on the autism spectrum, I worry about my son's future.

I'm concerned about how America and the world will look at him--what inequality and racial divides will be awaiting him? There are two things that Israel cannot change, and these are the color of his skin and the fact that he has a diagnosis on the autism spectrum.

As a parent it is my responsibility to Israel to recognize these two facts that he cannot change. These realities do not make him lesser or greater than another. The only thing that will make him great is the content of his heart and his willingness to accept and find value in others, no matter what differences they may have. I'm teaching him that individuality is a gift, and to accept and appreciate the individuality in each human being.

Each of us has had our pleasant, and I'm sure not so pleasant, experiences during the COVID-19 pandemic. One of the positive factors for me has been the opportunity to learn and observe Israel's strengths and weaknesses, as related to his education. Israel, will be entering the fifth grade this upcoming school year. He is accustomed to being in a physical classroom environment with his teachers and peers. Virtual schooling has created an uncomfortable and unfamiliar learning environment, accompanied with anxiety, not only for Israel, but myself as well. 

While Israel has had a tendency of being easy to please, during the pandemic, he has been a good self-advocate. Israel has been very clear with his occupational and speech therapists about his dissatisfaction with virtual learning, and that he needs in-person instruction. Israel would like to return to school in the fall, but, of course, how the Baltimore schools will proceed is not yet clear. 

As a parent and an advocate for my son, I am committed and obligated to find what fits and works for Israel's educational and spiritual development so that he may develop into the best human being he was created and designed to be. There has been a dirty, ugly reality swept under America's rug for so long, which some cannot see and some continue to ignore, and that is "the wrong color of skin," which has led to racial disparity and injustice. 

However, there has been a resurgence of the awareness that black lives matter, and that black disabled lives matter. I was a little boy when one of the amazing heroes who fought against social injustice and disparity for black lives, people of color, was  murdered. This magnificent hero and man was Dr. Martin Luther King.

In Washington D.C., on 28 August 1963, at the Lincoln Memorial, there was a timeless speech given by Dr. King, entitled,  "I Have a Dream." The sad reality--which makes this remarkable speech timeless – is, as a whole, America and every American hasn't reached that "mountain top," so it's still a dream, Dr. King's dream, and now my dream.

"I have a dream that one day on the red hills of Georgia, sons of former slaves and sons of former slave-owners will be able to sit down together at the table of brotherhood … I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character.”

If I had the opportunity to add anything to the “I Have a Dream” speech, this is what I would add:

“I have a dream that...little black boys and black girls will be able to join hands with little white boys and white girls” and that all children, no matter the color of their skin, or if they have autism, are in a wheelchair, visually impaired or hearing impaired, no matter what challenges or differences, that they will be accepted and recognized as individuals, and valued for their unique individuality.

I am raising Israel so that he will be accepting of the color of someone's skin, and accepting of the differences and challenges of others. Some of these differences are apparent, and some are not. 

Tolerance, acceptance, advocating for self and others are gifts that I am sharing with my son. What gifts are you, as a parent sharing with your child? Prejudice and bigotry start at home. Like an inheritance or an heirloom, they are taught and passed down through generations. We all need to ask ourselves, what are we passing down?

There is only one race and we all belong to that one race. No matter our unique individual differences, we all belong to the same race, the only race, the human race.

I want to extend my appreciation and gratitude to Little Lobbyists, for all that they have done and continue to do for my son Israel and all children and individuals who have unique challenges and obstacles, as well as the support they have given me as a parent.

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Rico Winston is a commitee member of the Friends of C.A.R.D (Center for Autism at The Kennedy Krieger institute), a member of The Spark for Autism Community Advisory Council, and the founder & director of The Israel Winston Family Empowerment Corp., a nonprofit organization. He is currently completing the Arc of Maryland’s Partners in Policymaking course to increase his advocacy skills for people with disabilities.

Israel Winston enjoys horseback riding and is currently a student of the martial arts.

Claire and her siblings

Jeneva is excited to interview Jamie Davis Smith, a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate. Jamie is a member of Little Lobbyists, and her articles about her family's experiences with disability and advocacy are frequently featured in national publications.

Tell me about your family. 

My husband and I have four kids, two boys and two girls ranging in age from 5 to 13. We have a very busy and loud house. We like going for walks around the neighborhood, hikes on accessible trails, seeing movies, and going to accessible playgrounds. Our absolute favorite thing to do as a family is go to amusement parks.  

Claire is 13 years old and loves ice cream, being in or near water, puppet shows, people watching, and being tickled by her siblings. She loves school and looking through books (especially if there are pictures of the beach) and fashion magazines.  

Tell me more about Claire's complex medical needs and disabilities. 

Claire has a duplication of chromosome 2. Her syndrome does not have a name because it's so rare, but this syndrome has impacted nearly every part of her body. For example, the hemispheres of her brain are not connected, and her heart is not in the proper place. She has multiple disabilities and is medically complex. She has intellectual and developmental disabilities (I/DD), epilepsy, autism, and asthma, among other health issues. She communicates with a limited number of signs, and by pointing, and is learning to use an assistive communication device. She uses a wheelchair and needs full support for all activities of daily living from feeding to getting dressed.  

You've written a lot about Claire for publication. In the disability community, there's sometimes been controversy when parents write about their children with disabilities. How have you dealt with your own feelings about this? What steps have you taken to protect Claire in your writing?

In all of my writing I try to introduce the readers to Claire and make sure they get to know her. In a way she could be any child. There are some things I do not write about. I do not write about anything that I think would embarrass her or share her worst moments. Sometimes I struggle with this because Claire cannot give me consent to write about her. I was very private before the 2016 election about Claire, but compelled to share more of Claire's story after it became clear that her access to healthcare and education was under attack. At that point I felt that it was in Claire's best interest to speak up about what was at stake. While Claire cannot give consent for me to write about her, as her parent I make all kinds of decisions for her as I do for Claire's three siblings. I may not always get things right, but I always try to act in Claire's best interests and speak the truth. I always try to do what is best for Claire, even if that means speaking some unpleasant truths or exposing some parts of our lives I would have otherwise kept private.   

What's your advice to parents who are seeking to write and publish about their children with disabilities?

If your children can give consent for you to write about them, make sure you have it. Anything that you publish may be around for a long time, and your child may find it one day. Even if you have your young child's consent, remember that as an adult you are in a better position to understand the consequences of writing about something potentially embarrassing about your child (such as toileting issues) or that may have consequences your child may not anticipate. Unfortunately, we still live in a world where people with disabilities are discriminated against, and publicly sharing a mental health issue or autism diagnosis may have consequences for your child later in life. It should be your child's decision whether they want to shoulder that risk of not. In that respect, I’ve  been astounded at the capacity some teenagers and young adults have to understand how sharing their stories can help others, and readily agree to share some intimate details of their lives.  

How have you engaged Claire in self-advocacy, and how do you hope to continue to do so in the future?  

As part of Little Lobbyists, Claire has gone to the Capitol and attended many other events such as press conferences and protests. She is able to quite literally put a face to the attacks on the Affordable Care Act (ACA), Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), and other issues impacting disabled people. She is able to advocate just by showing up and being herself. She loves being around people, and I hope that she continues to enjoy herself while engaging in advocacy.  

How has advocacy given meaning to your life and to Claire's?

We have been able to bring about real change, both nationally and locally. When an accessible swing was removed from our local playground, my writing about Claire and sharing how much she loved the swing resulted in the swing being replaced. When our local elementary school began locking accessible lifts, our sharing Claire's story (including how we were trapped in the school for over 20 minutes while staff searched for the key) helped to make the school more accessible. With the ACA under constant attack, sharing what the ACA has meant for Claire has helped convince both the public and lawmakers of the importance of access to healthcare. I am proud of what we have accomplished, but know that there is still a lot of progress that needs to be made. Nearly everyday we are faced with obstacles in Claire's way, from cars without handicapped placards parking in much-needed accessible spots to able bodied people sitting in accessible movie theater seats to playgrounds that lack accessible equipment. Then there are the larger issues such as attacks on healthcare and special education. Claire and I, along with her siblings, know that we can use our voices to bring about change and make the world a better, more accessible, and more understanding place for Claire.

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

Advocacy is a way of ensuring your rights and needs are not overlooked, and a way of "bending the arc towards justice," as Martin Luther King, Jr., said. 

In these troubling times, what gives you hope?

I have hope that so many people are speaking up and showing up. I have hope that so many people are outraged at the injustices we see in our economic and healthcare system, which injustices disproportionately affect people of color, resulting in deaths at higher rates from Covid-19 to police violence. I have hope that the action we are seeing in the streets will translate to real change. I have hope that voters will cast their ballots in record numbers this November. I have hope that more people are beginning to realize that they are complicit by remaining silent, because remaining silent favors the status quo.      

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Jeneva and Rob on a visit to the Senate office buildings

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a recurring 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, Castin, is currently a student at Middlebury College. 

Angela Eilers and her family

I’m a mother of three, living in sunny southern California. I shuttle kids to soccer practice and ice skating lessons. I also worry every day about my children’s access to health insurance. My daughter, Myka, all of ten years old, has accrued over $500k in medical costs, most of these in her first year of life. Myka was diagnosed with an undetected congenital heart defect (CHD) days after her birth. She underwent two open heart surgeries before her first birthday. She will forever be labeled as a patient with a pre-existing condition. Did I mention she’s only 10? 

Myka was diagnosed with her heart defect in September of 2009, just months after the Affordable Care Act (ACA) was introduced in Congress. I watched some of the coverage while in her cardiovascular ICU room after her first open heart surgery when she was just three-and-a-half months old. Even before we knew we had a child with a serious pre-existing condition, I had supported the bill vehemently. A CHD diagnosis was by far the most frightening news we had ever received. Her second surgery was at 11 months old. Surgery never cures a child with CHD. She will live with this condition for her entire life. 

Myka is an otherwise healthy girl. She loves school, her friends, ice skating, and American Ninja Warrior. But. Underneath her tough exterior, she will be monitored by cardiologists for the rest of her life. She will require yearly echocardiograms to monitor the blood flow coming in and out of her heart. 

The ACA created consumer protections for every American, young and old. Before the ACA, people faced lifetime caps and were often denied coverage for having a pre-existing condition, including conditions like Myka has. I was relieved when the ACA passed Congress and was signed into law by President Barack Obama in 2010.

The ACA cleared the way for us to become entrepreneurs in 2013. At the end of 2012, due to the economic downturn, my husband was laid off from his job as a research analyst, and his job provided our health insurance. Before the ACA, employer-sponsored health care had chained us to jobs working for other people. Because we knew the ACA insurance exchanges would begin opening in states by October 2013, we decided to take the leap to start our own business. The ACA meant that, despite having a child with a serious pre-existing condition, we knew would not be denied coverage. 

So we started our own company: Eilers & Krejcik Gaming LLC. It wasn’t all easy. First, we had to use COBRA to extend my husband’s employer-based health plan, and the ACA plan we needed was expensive. But we had no choice: Having access to healthcare was as vital to our family as a roof over our head or food on our table. The ACA doesn’t just provide peace of mind for our family. The ACA helps 135 million other individuals and their families living with pre-existing conditions or chronic illnesses that would bankrupt them. In my congressional district alone, 319,000 people live with a pre-existing condition.

It’s up to parents like myself to protect the health care of children like mine. But we cannot do it alone. We need everyone’s help. The health and well-being of millions of people hang in the balance. I’m a mother doing everything I can to protect my child. I’m no different than any other parent who would move mountains to protect their child. Trump’s effort to overturn the ACA is an egregious assault on the health of the most fragile. We must all hold the Trump Administration and elected officials accountable for this potential loss of health care. 

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

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.  

Ken Capone, Director of People on the Go of Maryland

Jeneva is delighted to interview Ken Capone, Director of People On the Go of Maryland, a statewide self-advocacy organization for people with disabilities. The Maryland State Assembly often turns to Ken to elucidate disability issues in its legislative deliberations. 

Tell me about yourself.  
I was the second youngest of six children with working parents. Growing up, all I knew was that I had plenty of siblings (three brothers and two sisters) and friends to play with! Being part of the community would not have been possible had my parents followed the doctor's advice and institutionalized me. In those days, doctors recommended institutional placement as the only way to care properly for a child born with a disability. I am grateful that my parents made the decision to raise me at home. 

I graduated from high school in 1983 with my peers. After high school, I set my sights on post-secondary education and work. Today I have a full time job; I live on my own. I utilize the state Medicaid waiver program and am able to self-direct my services and supports. I have four direct support professionals who assist me with my daily needs. I started my career as a Quality of Life Surveyor on the Ask Me Project in Maryland. This launched my career in policy and advocacy for people with intellectual and developmental disabilities; I am now the director for People On the Go of Maryland.

Tell me about your disabilities and the adaptations you need to function in an able-bodied world. 
My diagnosis is Cerebral Palsy. I rely on staff for my personal needs. Since I don’t have use of my voice, I need technology to help with that. I use a communication device (an iPad) to speak. I use a “headstick” to type; it acts like my hands. I also control my power wheelchair with my headstick. I have an accessible van so I can go work on a daily basis and get to where I need to be.

 Tell me about People on the Go, and how you became involved.
People On the Go of Maryland is the state-wide advocacy organization for people with intellectual and developmental disabilities. We have been in existence for 30 years, working on inclusion for all. Through grass roots efforts and strategic partnerships, POG has been instrumental in advancing the rights of people with disabilities throughout the state and around the country. We respect the individuality of our members and are committed to making inclusion a priority so everyone feels empowered, valued, and heard.

I got involved in the group by word of mouth. I attended monthly meetings, and I started doing more with the group, such as testifying on legislation and participating in training. 

When POG received a grant from the Maryland Developmental Disability Council, I was  asked by the group if I would be the leader of the group and the rest is H-I-S-T-O-R-Y.

 What have been your most recent areas of advocacy for disability civil rights? What do you consider your greatest success?
My greatest success is having a bill named after me, “The Ken Capone Equal Employment Act.” People On the Go of Maryland was the lead organization in getting this important piece of legislation passed. The Equal Employment Act eliminates paying people with disabilities a sub-minimum wage in Maryland.  

 What do you consider your first act of self-advocacy as a child or young adult?
That’s a hard question because I was involved in every decision my parents made for me, which I feel is very important for people with disabilities. That gave me confidence to make decisions. My mother didn’t want me to move out and buy my first condominium, but I made that tough decision to buy it and move out. A couple of years later, I wanted to sell the condominium and buy a single family house. My mother wanted me to stay in the condominium. I made the decision to sell it and bought the house. After a couple of years in the house, my mother’s health deteriorated, so I built an in-law suite on my house, and mom stayed with me for the remainder of her life.

 How has advocacy given meaning to your life?
Self-advocacy has given me the knowledge, confidence, and the assurance in myself to assist other people with disabilities in learning how important advocacy is for everyone, not just for people with disabilities. Self-advocacy skills have given me the ability to live the life that I dreamt about as a child. Being employed has given me the life of my own choosing.

 If you could define advocacy in a single sentence, what would be your definition?
Advocacy is the empowerment of people to obtain the knowledge to achieve their goals and dreams in life.

In these troubling times, what gives you hope?
I am seeing more institutions close around the country. Virginia just closed one. I am seeing more states ending the practice of paying people a sub-minimum wage, and ending sheltered workshops. I am seeing more states becoming employment-first states. Employment First is a movement to deliver meaningful employment, fair wages, and career advancement for people with disabilities.

I believe that whether you were born with a disability or without, we truly want the same thing: to be employed, contributing citizens; homeowners; and to have relationships and families. Today children who are born with a disability have a better chance at all of these things than those of us born 50 years ago.

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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. 

Samantha and Little Lobbyists Josephine

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

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

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

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

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

Josephine riding her bike.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Liz Randolph attends Monroe Community College where she is completing her associate’s degree in Health Studies. Her goal is to become a nurse practitioner. She is a member of the Phi Theta Kappa Honor Society and the Co-President of the Holocaust, Genocide, and Human Rights Project at Monroe Community College. Her passions include science, working with children, and advocacy. She lives in Rochester, New York.

Tell me about yourself.
When I become a nurse practitioner, I would love to help ease the transition between pediatric and adult care, as that has been nothing short of a nightmare for me. Furthermore, the psychosocial needs of young adults are not being met in either setting, pediatrics or adult care, currently. Our healthcare system is in desperate need of help. 

Before deciding on an NP practice, I wanted to become a child life specialist. I am a firm believer in family-centered care, but I quickly realized that I would not be content without being hands-on with medical care-plus, I love science! 

I have an amazing family who is always there for me, and a great group of friends. I am so thankful for my support network and do not know where I would be without them.

Tell me about your medical needs and disabilities.
I have dealt with medical issues my whole life. I have mitochondrial disease and Ehlers-Danlos Syndrome; these have caused a slew of issues from hypotonia (low muscle tone) to motility disorders (digestive issues). I had my feeding tube placed when I was eighteen months old, and I am now twenty-one. I also now have a broviac (central line), and a cecostomy tube, which aids the function of my digestive tract. 

What’s the upside of tube feeding? 
The biggest upside to tube feeding is my life. I would not be here today without my feeding tube. Everything that I do is because of my feeding tube, not in spite of it. It has enabled me to be fed, nourished, and to have the energy to accomplish the things that I want to do. My feeding tube is not the enemy. Constantly striving to get rid of it is unrealistic at this point; instead, I want to accept where I am today and celebrate the very thing that has given me life.

Have you faced any bias as a person who depends on tube feeding? How have you dealt with that?
One time I had a surgeon say to me, "I'm sorry, I know that everyone's goal is a tube-free life." This comment stopped me in my tracks. That is most definitely not my goal. 

It isn’t realistic at this point. There is always a chance that the day might come, but it is an even bigger possibility that I will have my feeding tube for the rest of my life. If I were to fixate on the unrealistic goal of a tube-free life, I would not be able to learn to love myself the way I am. 

Holding yourself to an unattainable standard is not healthy. It’s no different than the unrealistic standards for beauty. I will not wait around for a day that may never come to strive for success. I’m not saying that it’s a bad thing to work toward tube removal, just that it should not be the constant focus. It’s not always realistic, and, instead of apologizing, we need to promote acceptance and encourage others to understand that it’s okay to be different. Learn to thrive where you are instead of waiting for things to change. 

What do you consider your first act of self-advocacy?
When you grow up in and out of hospitals, it is only natural that your first acts of self-advocacy begin with doctors. I learned quickly that in order to keep myself safe that I had to be on top of my health care, and that doctors do not know everything. I have been advocating for myself in that regard for as long as I can remember. This snowballed as I grew up and realized that my story could help people. 

How has advocacy added meaning to your life?
Advocacy has given me an outlet to do what I love: Help other people. It has given me a way to show others that they can do something when everyone else is telling them that they cannot. I love being able to show others that they can thrive. There is nothing more fulfilling than watching the relief wash over a parent who is terrified about their child’s future, or  watching a child’s face light up because “We match!”, or making a friend who has walked the same path as I have. Advocacy has also helped me find my voice. Advocacy has helped me use my story to turn even the most painful parts into something meaningful. 

If you could define advocacy in a single sentence, what would be your definition?
Advocacy opens the door to a better world in which we all listen to and learn from each other. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our Little Lobbyists families began their whirlwind day in the Capitol by attending a press conferences held by their hosts with other guests for the 2020 State of the Union Address.

Last week four of our Little Lobbyists families were honored to attend the State of the Union, representing all of our families of kids with complex medical needs and disabilities. We asked them to share their experience with us. 

Rep. Wexton with Aire and Walewska in front of the Capitol.

Walewska Watkins and her son Little Lobbyists Aire were guests of Representative Jennifer Wexton (VA-10): 

I’ll remember Rep. Wexton’s gentle voice as she took my son Aire by the hand into the Capitol, Rep. Dingell’s sincere pain at hearing terminal patient’s stories, Sen. Stabenow’s sweet joy when speaking about her granddaughter’s fight against congenital heart disease, and, of course, Aire’s little boy pride at standing up for health care (“Because it’s health care, not health careless.”) I’ll treasure the LatinX community’s delight at hearing my Congresswoman speak Spanish and my voice advocating for the protection of our children with preexisting medical conditions and disabilities.

Sitting with the main act beneath me, I couldn’t help but notice the state and territorial shields that decorate the ceiling of the House Chamber. As a Puerto Rican islander, I was delighted by the irony that our territorial shield stood high above him—a silent remainder of the thousands who unnecessarily fell ill, died, or were displaced after Hurricane María and who will forever hang over his head.

I have no doubt that the main act doesn’t believe his own words and believes they can distract or destroy us. He believes this, because he thinks the State of the Union is just a speech he gives. If he really wanted to defeat us, he should have cancelled the show so we couldn’t spend the day connecting with patients, families, and activists from around the nation. If he wanted to win, he shouldn’t have given us the chance to learn about each other’s initiatives, strategies, and success. The State of the Union is what it is, but the State of our activism is United.

Andrea her daughter Louisa and her husband Tom with Senator Stabenow.

Andrea Pietrowsky, mom of Little Lobbyists Louisa, was the guest of Senator Debbie Stabenow (MI):

Tuesday evening was certainly unforgettable. It was an honor to attend as a guest of Senator Stabenow, and represent not only my daughter’s personal health care story but stand for the rights of children with complex medical needs and disabilities everywhere. 

As a guest I was obligated to follow the formalities of Congress, and the rules on the back of my ticket—which interestingly indicated to remain seated and not to applaud. My inner dialogue said, “Yes, I can do this”.  Seated in the gallery between two friendly and conversational individuals, I quickly learned they too both had personal preexisting stories of their own. 

I was eager to hear how President Trump would explain his commitment to protect Americans with pre-existing conditions when in fact everything he has done since taking office was aimed at decimating the Affordable Care Act and taking away those very protections. However, his words were hollow and contradictory. He specifically said, “A good life for American families also requires the most affordable, innovative, and high-quality health care system on Earth.” But where on Earth would we find this without legal protections from discriminatory health insurance practices? 

He spoke of an executive order he signed that would call for medical transparency of costs, but that’s not even useful without coverage of all pre-existing conditions. How could one search for a “bargain” on something as costly as open heart surgery and inpatient recovery? Or the complex birth of a premature baby? Or go comparison shopping for unplanned emergencies? 

The topic of prescription drug costs was no better, actually much worse. We all heard his disingenuous call to action, “Get a [bipartisan prescription drug pricing] bill on my desk, and I will sign it into law immediately.” But we know that Republican Senator McConnell has been sitting on H.R.3 - The Elijah E. Cummings Lower Drug Costs Now Act for several months.

Another disappointing moment was the abandonment of a commitment to maintaining and improving public education, which is essential for all children, including children with disabilities. Our president referred to public education twice by calling it “government education” purposely creating a negative connotation to sell it as some sort of form of socialism. 

It was sinking feeling to step away from a once-in-a-lifetime opportunity questioning if a single truth was told among so many blatant lies.

Leslie with her son Jonathan and Senator Schumer

Leslie G. and Little Lobbyists Jonathan were the guests of Senate Minority Leader Chuck Schumer (NY)

“The day was an exciting whirlwind of activity! Members of Senator Schumer's staff really went out of their way to accommodate us and ensure we had a special day. Everyone was gracious, incredibly helpful and attentive. It felt surreal to be in Senator Schumer’s office, he even personally wrote a note to excuse Jonathan from school for the day! It was an exciting experience we will remember for a long time! Jonathan was so keyed up, even though he was tired, it took him until almost midnight to get to sleep.” Comments taken from dictation.

Elena and Xiomara with Speaker Pelosi

Elena Hung and Little Lobbyists Xiomara were the guests of Speaker Nancy Pelosi:

It started with me picking up Xiomara from school and taking the train down to DC as we always do. We have done this trip so often and yet, no matter how many times we walk out of Union Station, the moment I see the Capitol for the first time still takes my breath away. Every single time. It might be my immigrant roots or my stubborn optimism, but the sight of the dome will always be a special treat for me.

I appreciated the opportunity to attend the State of the Union, to be in that room and experience history taking place. But I heard the same lies you heard, and I saw the same Republican members you saw chant "four more years!" without any regard for how their policies are harming and killing our loved ones. 

It was disgusting. I sat through all of that, arms folded across my chest, shaking my head. I may or may not have forcefully called out "that's not true!" several times. I did not stand for the president as he entered and left the chamber. I did not clap as he boasted about his cruelty. Instead, I said a quick prayer for all those who have been terrorized because of him.

But this shameful spectacle does not define my evening.

Immediately before the SOTU, Speaker Pelosi hosted a dinner reception for House Democratic members and their guests. I ran into so many members and so many staffers I have worked with. Many of them have watched Xiomara grow up over the years. Xiomara recognized them too.

Throughout the reception, I also got to meet other invited guests. A majority of them were health care advocates doing amazing work. Being in a space like this filled with some of the most powerful and generous people in the country can be incredibly intimidating and stressful, but instead, it felt like a reunion with chosen family who really, really love my kid. 

I had shared Xiomara's accessibility needs ahead of time, and we had a team that was assigned to us to ensure our comfort. I felt so supported in every way knowing Xiomara was being included with so much thoughtful planning. And that was really special.

As I headed back home that night, I was left with this: in these dark times, there are still lots and lots of good people doing good work. There are lots of people who care a lot, and they are not giving up. Neither should we.

Elena and Xiomara on the Speaker’s balcony in front of a spectacular view of Washington D.C. at night.

Laura Robeson and her son, Danny

Laura Robeson lives in Prairie Village, Kansas, with her son, Danny, age eight, and her husband. Laura has an M.Ed. in Elementary Education from Rockhurst University and, while she currently stays home with Danny, considers herself a lifelong educator. Laura attended the 2019 State of the Union Address as the guest of U.S. Representative Sharice Davids to honor Laura’s work in health care advocacy. 

Laura began her advocacy journey in 2014, fighting then-Kansas-Governor Brownbeck’s tax experiment, which would have reduced state funds for health care services. Currently, she’s working with state legislators to pass Medicaid Expansion, an option available to states under the ACA.

Tell me about your family.
We are a family on the go! Danny loves meeting people and seeing his friends at the grocery store, library, and swimming pool. Danny truly connects with people and builds community. His smile is contagious, and he brings joy everywhere he goes. I am proud of the fact that I’m known as "Danny's Mom." He can be pretty stubborn, too! His memory is long, and he’s often displeased when we leave his favorite places to go home. Danny makes you feel happier just being with him.

Tell me more about Danny: What are his medical needs?
Danny was born prematurely and has been diagnosed with spasticity, quadriplegic cerebral palsy, epilepsy, and cortical vision impairment. He uses a wheelchair to get around, a g-tube for nutrition, and requires constant monitoring due to his risk for seizures.

How would the lives of Kansans with disabilities improve if the state were to pass Medicaid Expansion? 
Danny qualifies for KanCare, a Medicaid waiver program for children with disabilities; however, there are many more Kansas families, especially caregivers, who need Medicaid coverage. There are thousands of families across our state who rely on a family member for caregiver support. These people take breaks from their jobs and careers, or juggle full- and part-time work, in order to take responsibility for the care of disabled and medically complex loved ones. Medicaid Expansion would ensure that caregivers receive the health care they need to stay healthy.

What steps have you taken as an advocate to bring about change in Kansas? What have you found works best when communicating with state legislators? 
My advocacy started in 2015 through my school district's Special Education PTA. During this time, our state revenues were collapsing due to the failed Brownback trickle-down economics "tax experiment." I wrote letters to state legislators, went to forums, and educated myself on the issues. I spoke with legislators and candidates and shared our story. I then volunteered for state legislative campaigns in 2016 by canvassing and phone banking. Oftentimes, I brought Danny with me. Danny LOVES meeting people at their doorstep! 

During the battles for the ACA in 2017, I began visiting local U.S. Senate and House offices to share our story. While it may be easy to dismiss facts and numbers, it is very hard to dismiss the people actually affected by policy decisions. I spoke at multiple health care town halls and protests and continued to share our life story. After my U.S. Representative voted for the disastrous ACHA bill, which would have decimated ACA protections and Medicaid, I knew I needed to work toward change in our congressional representation. 

Danny and I spent countless weekends campaigning for Sharice Davids, sharing our story through canvassing and at health care events. While it was never easy to make the personal public, I always asked myself the same questions: "If not me, who? If not now, when?” I’m pleased that Danny and I were part of the hard work of our entire community that helped elect Sharice Davids in 2018.

How have you engaged Danny in self-advocacy, and/or how do you hope to engage him in self-advocacy in the future?
Danny loves speaking with people, and I always ask for his input. To the best of my ability, I center Danny's experience. This is his life story.

How has advocacy given meaning to your life? 
I often feel like an "accidental advocate." It certainly was never in my plans. If our story and our participation have moved the needle toward a more equitable and just health care system, it has certainly been worth it. I have been honored to meet and fight alongside amazing families and self-advocates. I’ve found strength in their willingness to stand up and speak out, and they’ve pushed me to go the extra mile when it was hard. I am forever grateful for their friendship and support.

If you could define advocacy in a single sentence, what would be your definition?
Advocacy is using your story and experience to impact change.

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We hope you enjoyed the second 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. 

** CN: hospice care, loss, sibling loss, grief, death of child, description of child death **

February 3, 2020

I am sitting at the IUPUI campus Starbucks. Well, they don’t call it a Starbucks. They call it “Barnes & Noble Cafe” since it’s in the Barnes & Noble bookstore, but they serve Starbucks coffee, make all the same drinks, and sell all the same Starbucks merchandise. The only real difference is that they don’t take Starbucks gift cards. I tried to pay with one for my grande iced white chocolate mocha and the barista regretfully informed me they cannot accept them since it’s a “Barnes & Noble Cafe.” She proceeded to tell me how sorry she is as often students come in with no payment method besides the gift card. She described a student who came in 30 minutes before me and only had the gift card. She said she paid for his coffee. 

She did not offer to pay for mine.

Which is fine. I’m not looking for handouts and I, somehow, have the funds to pay for a $5 coffee. Even so, I wonder if she would have paid if she knew why I am here. What day it is. Why I do all my writing at the “Barnes & Noble Cafe” instead of the comfort of my house not 20 mintues away. How I cannot stand to walk into my own home, quiet and missing its life force. 

February 3, 2019

The process of watching my brother die takes longer than I expect. For starters, I never thought he would make it past age one. Here he is at seven, defying the odds. Having no choice but to enter into hospice on January 1st, 2019, I anticipated him to die within a week. Somehow, he stubbornly stayed alive over a month. He spent all seven years of his life proving everyone wrong and it seems he’s going to do that in death too.

It’s the first Sunday of February. We know we have to “pull the plug,” as they say. He’s been unconscious for over 24 hours. The doctor tells us he’s already gone but the ventilator will keep his body going until it becomes painful. It will be better if we turn it off. He will go peacefully.

My family and I gather around him, holding him as we take the final moments. The hospice nurse, doctor, and music therapist stand nearby, as well as one of his personal doctors who made the trip out to be with us. She didn’t have to, but she wanted to because she loves us and, more importantly, she loves my brother. 

My brain is buzzing as they say it’s finally time. Shut the ventilator off. 

The doctor is supposed to hit the power button. She can’t figure out how. I’m closest and my brain is buzzing, so I hit the power button and the ventilator shuts off and I watch my brother’s lips turn blue and the color drain from his face and the doctor come up with the stethoscope and announce that he’s gone.

The humidifier alarm on the ventilator goes off, a little too late to announce that something is wrong. 

No one can figure out how to turn it off either, so I do that too. 

The panic sets in immediately. My little brother, my joy, the person I have planned my life around, is gone. He’s gone and he’s never coming back and while I know it’s not my fault, I’m the one who “pulled the plug.” 

I hit the button that stopped the air from entering his lungs, that took his body away, that made it so I can never touch his hair or hold his hand or kiss his forehead or hug him tight, tight, tighter. 

Just moments after he was born, I began preparing for this moment. I knew he could be taken away at any point, that he was more fragile than a typical person, but that doesn’t mean I can make sense of why or how this is happening. He’s seven years old. He’s too young to die.

His death is the most peaceful thing I have ever seen. He does not stir or jerk or react in any way. Slow, slow, slowly, he passes away. He was already gone by the time I shut the ventilator off. His body was empty of the soul that made him the most incredible, loving child- the greatest brother in the world. 

Nothing is left but the shell, but the shell is what I recognize. The shell is what I have played with and kissed and hugged all these years. It’s not easy to say goodbye to the shell.

For the first time in seven years, the house is quiet.

No ventilator breathing in the background of conversation. No feed bag for the GJ-tube quietly whirring if you listen hard enough. No Mickey Mouse Clubhouse blasting from the TV. No laughter. No little legs kicking against a wheelchair. No teeth grinding together. No talking. No communication pad giving a response. 

The house is quiet. Too quiet. The world is quiet. 

February 3, 2020

The world is loud. 

I sit in the not-Starbucks. Impeachment trial updates flash on my phone. The Iowa caucus is underway. Coronavirus takes more victims. Another person tries to pay with a Starbucks gift card...

My brother spent his life fighting his genetics, fighting to live. Every day was a testament to his strength and resolve. Every day he proved this world is worth something. He was not expected to live, but he did so anyway.

I am expected to live. 

Despite the pain and emptiness and quiet in my soul, the world goes on. The world remains loud. I can let the pain and emptiness and quiet take me over and drag me away from the world my brother fought to live in, or I can fight. I can be louder. 

As the one year anniversary approached, I spent a lot of time thinking about what I want and who I want to be. What do I want to stand for? How do I want to fight in this world that is, apparently, worth fighting for? The answer is still a work in the making, but I know at least a few things. I know, without a doubt in my mind, that I want to make a difference. I want to create a better world for children like my brother. While my power is limited to the few resources at my disposal, I am going to do what I can. I can share my brother’s story and I can encourage others to be heard, to make sure those in power know we will not stop until every little boy and girl gets to live the longest, best life they can.

I will stand for health care rights so people like my brother can have the treatment and care they deserve. My brother may have been the most stubborn little boy I have ever met, but that resolve alone would not have been enough to keep him alive. Without access to health care and the wonderful doctors, nurses, therapists, and teachers who took care of and provided for him, he would not have survived seven years. 

The Trump administration recently unveiled its latest plan for Medicaid, Healthy Adult Opportunity, which would turn the program into a block grant. By doing this, states would no longer have the federal commitment to serve eligible individuals and families, leaving millions without healthcare. Under the block grant program, states would have the right to cut several benefits, including coverage for prescription drugs, copays, and treatment services. 

Currently, 1 in 5 Americans are covered by Medicaid, including 45 million children. One child being negatively impacted by this plan is too many, but the consequences can easily reach millions. Medicaid is essential for people like my brother to survive and function. Having a special needs child is stressful enough on its own; no family should have the added struggle of wondering how they will afford necessary healthcare and services.

With the upcoming election, I beg you to stay informed of the policies at play. What are the candidates saying? Do they have the interest of the American people at heart? Do you want someone in office who will take funding away from programs that help children thrive and survive? 

I certainly don’t. 

It’s February 3, 2020, and my brain is still buzzing. My brain is buzzing because the fight is not over. My brother showed me this world is worth fighting for. Children with disabilities are worth fighting for. I will fight and I will be heard and I will not stop until those with disabilities have the rights they deserve. 

Call your representatives. Post your stories. Vote in the election.

Be louder than this loud, loud world.

photo of Sydney, the author, with her brother Colton

Antonis Tsapatakis by Nicholas Samaras http://underwater-photography.gr/portfolio-item/athletes/

I’ve seen this meme on Facebook a few times. If you can’t see the graphic, it’s a man underwater, standing beside an empty wheelchair. The caption reads “The power of water. The most beautiful picture you’ll see today.”

People share it because it feels inspirational that water is an equalizer, allowing the man to be “free” from his wheelchair. The media loves a good “overcoming the wheelchair” photo/story!

I’d challenge you to reconsider how you view physical disability though. Many wheelchair users don’t see themselves as needing to be fixed. As one writer said, “words are what confine and limit us – not our chairs, which are actually pretty great.” How might society’s attitudes about disability change if we worked towards celebrating people as they are, instead of viewing physical disability as lesser-than? We’d see less pity and more accommodations, more accessible venues.

Now, I’ve been guilty of this. My son Julian uses a wheelchair part-time. We used a stroller for years, past the age most kids stop. When he outgrew his umbrella stroller, I started looking into a “special needs stroller.” I remember discussing this with another mom in the physical therapy waiting room one day, and she asked why I didn’t just get him a wheelchair. I said I was worried about being judged for having a child in a wheelchair that could walk. In my head I thought, he’ll be judged for using a chair; people will see him as “less than.” And though I didn’t say it that day, if I’m being completely honest with myself, I didn’t want to see my child as “disabled enough” for a wheelchair. A special stroller seemed less … serious somehow?

But her words stuck with me, and I broached the subject to Julian’s physical therapist during the Marfan Walk, as Mark pushed Julian in one stroller and I pushed our daughter in another. His physical therapist agreed, and about 15 months (and so much insurance headache) later Julian had his wheelchair.

Julian with his wheels and his older brother Miles on a walk.

I’d thought of the chair as holding Julian back until the first time I saw him maneuver at the wheelchair clinic. It was then I realized that the chair is what’s allowing him to move forward (no pun intended). In a stroller, I always had to be there, pushing Julian along. With the new wheelchair and his Smart Drive, Julian can get around all on his own. With the chair, he doesn’t have pain stopping him from participating in activities. His peers are very understanding of the wheelchair, too (and often, over-eager to push him). The chair makes him free.

Julian doesn’t see using a wheelchair as a “second best” life. Recently when someone at church suggested that he’d be able to walk in Heaven someday, when his body is made perfect, Julian was hurt because his body is perfect now, just the way it is.

As parents, it’s painful to watch our children go through hard things, and I can appreciate that able-bodied people may have a hard time understanding that disability isn’t inherently bad. But when you see a meme like this, consider what it’s actually saying about disability before you share it. Remember: your kids are watching and listening to you, and the way you talk about their bodies will to set the tone for how they see themselves. Don’t let them think you believe their bodies are anything less than perfect.

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Maya Brown-Zimmerman is a stay-at-home mom to four kids with a variety of diagnoses including autism, Marfan syndrome, and a brain injury. She has a masters degree in Public Health and is the patient adviser to The Marfan Foundation's Professional Advisory Board. In her spare time she's going back to school, is a medical drama TV junkie, and enjoys reading and cooking. Maya blogs at Musings of a Marfan Mom. 

Simon on the first day of school this year.

Like all moms, I think my kid is pretty special. My son Simon has an amazing sense of humor and can find joy in every day. He draws hundreds of hearts on post-its and leaves them all around the house for his family and friends to find so we remember that he loves us. He’s great at Mario Kart, and he loves to go swimming. Simon also has Cerebral Palsy, Epilepsy, Hydrocephalus, Autism, and a unique genetic disorder. He has physical and intellectual disabilities. 

For 13 years as Simon’s mom and advocate, I’ve used the term “special” a lot. Unfortunately, I’ve used it less often to describe my awesome kid and more often to try to get him the things he needs just to be able to do the same things as other kids, like going to school and the park.  

Special education for learning.
Special needs equipment for getting around.
Special needs activities for being included.

Even though I use the term “special” so frequently to describe things Simon needs, the truth is that NONE of these things are actually special – they are necessary. Everyone needs to learn, get around, and be included. What is special is that people with disabilities and those who love them have to ask, and advocate, and plead, and push for every little ordinary thing. Even things as basic as public restrooms.

Many children with disabilities like my son need access to changing tables long past the point baby changing tables can support their weight, and there are no larger tables available. Putting a child on a bathroom floor is unsanitary and undignified. Changing an older child inside a vehicle is not private enough. As parents and caregivers we do everything we can to protect our children’s dignity and privacy; so when a change is needed families are often forced to go home. This limits our ability to go out and stay out in our community, and it limits our children’s opportunities to be included, have fun, and just be kids.    

Children with disabilities aren’t the only people impacted by this lack of restroom accessibility. Kids with disabilities grow up to be adults with disabilities who want to work and be a part of their communities. Through their service to our country, many veterans become disabled, and they deserve to come home to a community they can fully access. If we’re lucky, we will all age and with age comes disability. If we want to “age in place,” that place needs to accommodate our basic needs. Disability is a part of life.

Maryland State Senator Chris West (MD 42 -R) with Robert from Little Lobbyists chat outside the hearing room.

Using a public restroom isn’t a special need, it’s a necessity. This is why many states are now proposing bills that mandate adult changing equipment be included in the renovation or new construction of public buildings. Recently, I attended a hearing in Maryland for one such bill (SB 44) to support those testifying and to talk to my state legislators about why they should support this bill. My state senator Chris West (MD 42-R), who is a member of the Finance Committee where the bill was being introduced, even pointed out that many public places have already renovated bathrooms to include gender neutral/family areas which could easily accommodate adult changing tables. These tables fold flat against the wall and take no space when not in use.

None of us like talking about our need to use the restroom because, frankly, it’s uncomfortable and embarrassing. As a result, I was extra impressed with the bravery of those who showed up at the bill hearing to testify about their very personal needs. Not only did they show up, they waited quite some time for their turn to speak, despite the fact that – as one self advocate pointed out – there was no public restroom accessible to them in the Maryland Senate office building and many of them were in need of a change.

Here is some of what they had to say:   

“This Bill is an important step forward for people with disabilities to participate in employment and community access. … People with disabilities should be able to go out and enjoy the community without worrying if there will be a place where they can get clean.” - Ken Capone, Director of People On the Go of Maryland

“My disability does not prevent me from being in the community, but not being able to care for my personal hygiene does.” - Amanda, speaking on a panel with the Arc of Maryland

“I live my life everyday with no place for me to change, and that causes embarrassment for me. There ought to be a changing table here instead of telephones.” [in reference to the bank of obsolete landlines located in front of the restrooms near the hearing room] - Donna, speaking on a panel with the Maryland Developmental Disabilities Council

“I want to use the public restroom just like everyone else in my community. I am a registered and active voter.” - Robert, Little Lobbyists

Advocates from the Maryland Developmental Disabilities Council, the Arc of Maryland and Little Lobbyists waiting for their turn to testify in support of Maryland’s Senate bill 330.

Access for people with disabilities isn’t a special need; it’s a civil right. Here are some links to state bills supporting access to public restrooms (send us a message if we’re missing any so we can add to this list!). Please let your legislators know you support these bills and all civil rights for people with disabilities: A simple email or phone call can help us solve a simple problem with a big impact. And, if your state doesn’t yet have a bill for this? Suggest one (there are lots of examples below)! 

To find out how to contact your legislators (in any state), please visit: https://www.usa.gov/elected-officials 

Arizona (Already passed! Call to say thanks!): HB 2113
https://kjzz.org/content/929856/arizona-gov-ducey-signs-adult-changing-table-bill-law
And check out Dignified Changes, the advocacy group that got the Arizona bill passed and is working to expand this initiative.

California (Already passed! Call to say thanks!): AB 662
https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160AB662

Florida: SB 1106 / HB 669
https://www.floridatoday.com/story/news/newswire/2019/12/24/bill-seeks-require-adult-changing-tables-florida-public-restrooms/2740711001/

Georgia: SB 125
http://www.legis.ga.gov/Legislation/en-US/display/20192020/SB/125

Maryland: SB 44
http://mgaleg.maryland.gov/mgawebsite/Legislation/Details/SB0044?ys=2020RS

New Hampshire (Already passed! Call to say thanks!): HB 628
https://legiscan.com/NH/text/HB628/id/1851806

New York (Already passed! Call to say thanks!): A03940
https://www.governor.ny.gov/news/governor-cuomo-announces-passage-legislation-ensure-equal-access-diaper-changing-stations

Ohio: SB 249 / GA 133
https://radio.wosu.org/post/ohio-bill-would-require-more-adult-changing-tables-restrooms#stream/0

Oklahoma: “Max’s Law”
www.facebook.com/MickeyDollensOK/videos/3034829759892397/

Pennsylvania: HB 117
https://www.wesa.fm/post/advocates-say-adult-changing-table-bill-promises-dignity#stream/0