Disability Day of Mourning is an annual commemoration held on March 1st to remember the lives of people with disabilities murdered by their caregivers, particularly those killed by parents and other family members, and to demand justice for their deaths. Our executive director, Elena Hung, spoke at today’s vigil hosted by the Autistic Self Advocacy Network. To learn more and find a vigil near you please visit: https://autisticadvocacy.org/2022/02/2022-vigil-sites/

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I am here today to honor and remember those in our community who have died at the hands of their parents or caregivers. 

We see this unforgivable and criminal pattern play out over and over.  A parent kills their disabled child.  A caregiver murders their disabled family member.  And instead of accountability, the murderers are often met with sympathy.  Instead of justice, the victims are often forgotten.  

This is unacceptable, and it must stop.

I am Elena Hung, better known to some of you as Xiomara’s mom.  Xiomara is seven years old and in the second grade, attending school via virtual learning.  Xiomara is the joy of my life, and I am so lucky I get to be her mom.  She is happy, kind, clever, funny, and a little bit naughty.

Xiomara was born with serious 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 her nutrition, and a wheelchair to get around and explore the world around her.

I have often said:  there is not a single thing I would change about my daughter, but there are a million things I would change about this world so that it would be worthy of her.

And that is a world where our disabled children know without a doubt from our words and our actions that they matter, that their lives have value, and that we love them.

Here’s the thing:  Parenting a disabled child is hard, but that is because parenthood – done right – is hard.  Parenting a disabled child is also joyful, and that is because parenthood – done right – is joyful. 

When we only see parenting disabled children as hard but not as joyful, we are failing.  I am speaking to you on this Disability Day of Mourning because we are failing our disabled children, and we must urgently course correct.

Let’s commit to holding accountable the parents and caregivers who kill and murder the disabled people who trust them. And let’s honor the humanity of our disabled children and friends.  

Let’s support them, believe them, love them, and work towards creating a world that is worthy of them.

A row of candles lit in the darkness, reflected in the smooth surface below.

#1 Vaccines!

Vaccinations for COVID-19 began to roll out at the beginning of the year and we’ve worked hard to raise awareness and advocate for all our kids to be protected. We’re hoping shots for our littlest lobbyists and boosters for big kids will be available soon. Please keep doing all you can to protect yourself, your family, and all of us - wear a mask, get vaccinated and boosted as soon as you can! To learn more, visit vaccines.gov.

In the photo: Little Lobbyists Simon gets his COVID-19 vaccine!

#2 Virtual Meetings, Real Advocacy!

We love introducing legislators to our kids, and COVID didn’t change that. Like so many others, we took our work online and are continuing to make sure kids with complex medical needs and disabilities have a seat at the (virtual) table.

In the photo: Little Lobbyists Taryn and her mom Dawn meet with Senator Sinema and her Team.

#3 Congressional Testimony!

The American Rescue Plan included many provisions to help all our families, like the Child Tax Credit, funding for home and community based services for people with disabilities, and subsidies to make health insurance more affordable. Our Director of Communications, Laura LeBrun Hatcher, was invited to testify in the House of Representatives to explain why these provisions are so important, and why they must be made permanent.

In the photo: Little Lobbyists Simon’s mom and Director of Communications Laura LeBrun Hatcher provides testimony to the U.S. House of Representatives.

#4 Celebrating the Americans with Disabilities Act!

This year the ADA turned 31 and Little Lobbyists Executive Director Elena Hung was invited to a celebration marking the occasion in the White House Rose Garden. At the event, President Biden acknowledged that there is still much work needed to remove barriers to freedom and equality for Americans with disabilities and he affirmed his administration's commitment to advancing Disability Rights. Watch the ceremony here.  

In the photo: The president surrounded by the Vice President, disability advocates, Speaker Pelosi and other leaders mark the anniversary of the ADA.

#5 Meeting with the Vice President!

Twice this year, Little Lobbyists had the opportunity to meet with Vice President Kamala Harris to represent our families and discuss what our children with complex medical needs and disabilities need to survive and thrive. Communications Director Laura LeBrun Hatcher joined the Vice President at an event celebrating the Affordable Care Act and Little Lobbyists Claire’s mom Jamie Davis Smith sat down with the Vice President at her own kitchen table to discuss the importance of caregiving. Read Jamie’s account of her experience here.

In the photo: Vice President Kamala Harris sitting at the kitchen table for a conversation on caregiving with Little Lobbyists Claire’s mom Jaime Davis Smith.

#6 Care Can’t Wait!

President Biden’s agenda calls for a major investment in our country’s infrastructure — including social spending on health care, education, and caregiving as part of the critical foundation our country must support to remain strong. The social infrastructure bill is called the Build Back Better Act. Working closely with Senator Casey and Representative Dingell, Little Lobbyists provided input on the policies and funding our loved ones with complex medical needs and disabilities need to thrive at home instead of being forced into dangerous institutions. For the past several months we’ve advocated alongside many other organizations to get this historic legislation passed because for our families ”Care Can’t Wait!” To learn more, visit www.littlelobbyists.org/carecantwait.

In the photo: Activists lit up the night with “Care Can’t Wait” signs in front of the Capitol following a 24 hour rally.

#7 Powerful Partnerships!

In a year full of historic challenges and opportunities, we worked collaboratively with several organizations to advocate for the passage of the Build Back Better Act including: the Arc, Be A Hero, the American Association of People with Disabilities, the Autistic Self Advocacy Network, Caring Across Generations, the Center for American Progress, MomsRising, the National Domestic Workers Alliance, SEIU, and many more. In addition, we partnered closely with Ady Barkan’s organization Be A Hero to help share our families’ stories about the importance of home and community based services on a national platform.

In the photo: Director of Community Engagement and Little Lobbyists Sara and Emma’s mom Stacy Staggs shared her family’s story nationally through our partnership with Be A Hero.

#8 A “mom to mom” conversation with a U.S. Senator!

Executive Director Elena Hung had a mom to mom conversation with Senator Maggie Hassan. Elena and the Senator were both led to national advocacy through their experience as parents and caregivers of disabled children. They discussed the importance of Medicaid home and community based services and the policies we need to ensure our children have the civil rights they deserve. Watch the video here.

In the photo: A screen shot from the video call between Senator Hassan and Little Lobbyists Xiomara’s mom and Executive Director Elena Hung.

#9 The Build Back Better Act passed the House!

The Build Back Better Act includes historic investments in home and community based services, access to health care, education, childcare, paid leave, lower drug costs, and more that our families need. Our Executive Director Elena Hung was invited to the White House with a small group of disability advocates to support the final push to the House vote. Our work to get this bill passed is far from over – the legislation is currently in the Senate and intense advocacy will be needed to get it over the finish line. 

In the photo: Disability rights leaders, including our Executive Director Elena Hung, with a White House Associate Director beside the White House.

#10 Little Lobbyists are invited to the White House!

We work hard but also remember to take time to celebrate. At the invitation of the President and the First Lady, we spent some time viewing the beautiful holiday decor at the People’s House. Masks were worn and social distancing observed, but the lights shined just as bright. We appreciated the care taken by the Administration to ensure this year’s subdued holiday celebrations were as COVID safe as possible ahead of the Omicron surge.

In the photo: Members of the Little Lobbyists team, Elena Hung, Laura LeBrun Hatcher, and Jeneva Burroughs Stone stand in front of a stairway lit with candles leading to a festively decorated entrance to the White House before they tour the holiday decor.

In the coming year, Little Lobbyists will keep showing up to represent our families and make sure ALL kids with complex medical needs and disabilities have a seat at the table to inform the policies that affect them. To be a part of our ongoing advocacy, follow us on social media, share your story with us, and if you can, please consider donating to support our family-led and volunteer-powered work. 

Wishing everyone a happy and healthy 2022!

Dear Josephine,

Yesterday your father shared the news that your wonderful mom, Samantha, passed in her sleep early Christmas morning. Though we knew your mom had been battling cancer for a long time with incredible bravery, we still can’t believe we won’t see her again and our hearts are broken. We know our grief and shock are nothing compared to the loss you and your dad are facing. 

Over the next days, months, and years many of those who knew and loved your mom will share stories about her so you may know her better through their memories. They will tell you about her childhood, college escapades, and days as a daring derby girl. They will reflect on her love for your dad, her joy in motherhood, her professionalism at work, her commitment to social justice. 

Those of us who knew your mom through her advocacy with Little Lobbyists have been sharing our memories with one another, paying tribute to the wonderful person she was. We’d like to honor your mom’s memory by telling you how much we loved her and how – because of her love for you – she worked to change our country for the better. 

Your mom met up with us in 2017 when the political party in power was trying to destroy our country’s health care protections, threatening our kids with complex medical needs and disabilities access to the care they needed to survive and thrive at home instead of living in a medical facility or institution. (We hope by the time you read this letter that idea sounds absurd, and that our country finally guarantees health care as the right your mom and all the Little Lobbyists believe it is.) That summer, a small group of families – your mom and dad included – knew it was up to us to protect all our children.  We showed up on Capitol Hill to tell our stories. A reporter who wrote about our families gave us the name “Little Lobbyists” in honor of kids like you.

To paraphrase our co-founder Elena (who befriended your mom a year earlier in the local trach group), your mom knew there wasn’t a thing she’d change about you, but there were countless things she would change about our country for it to become the place you need to thrive. She took you with her to Capitol Hill, so members of Congress could meet you and see whose life was at stake in the votes they took. She wanted legislators to understand that a better future is possible for ALL of us with the right policies. 

Your mom’s warmth opened the door, and her determination got you both through it. She made sure you met future and past presidential candidates, including our first female Black and Asian Vice President, so you’d be represented by those in power. She gave powerful speeches in the Capitol and countless interviews to reporters, telling your family’s story over and over again. 

She never, ever gave up. 

Everyone who met your mom loved her. She radiated warmth and kindness and could make the most nervous and new-to-advocacy feel like they belonged. Even in serious situations, she brought joy with her — dressing you up in the most adorable tiny pink Doc Martens, trick-or-treating in the Senate, celebrating victories small and large. She kept in touch. She always showed up. 

Little by little, you and your mom and all our Little Lobbyists families changed hearts and minds. We saved our health care protections and are working to create the change our country needs to be worthy of you as you grow. Our deepest sorrow is knowing you will grow up without your mom beside you, where she most wanted to be.

As you face the challenges and triumphs in your future, know that our Little Lobbyists family will always be here for you. Most of all, know how much of your mom is part of you. 

Your smile has your mom’s open, gracious warmth. Your deep brown eyes have her joyful, mischievous sparkle – always ready to get into “good trouble.” Most of all, you have her determination. Your mom frequently beamed with pride when sharing your determination to reach each new milestone – eating, walking, climbing – and we all knew your spirit came from her. 

Dear Josephine – stay determined. Stay open and warm, joyful, a little mischievous, and always ready for good trouble. We promise we will keep showing up for you and all our families – in honor of your mother’s indomitable spirit – to create a country worthy of us all.

All our love, always, 

Your Little Lobbyists family 

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“The minute I met her I felt like we’d been friends forever. She was a bright and fierce force of nature. So much so that when you came within 50 feet of her she had her own gravity that pulled you in. She was a badass, an amazing friend and a person who always told it like it is.” - Tasha

“Sam was an amazing friend and mom. You could always depend on her, and we could talk for hours. She used to tell me so many stories about Jo, and man, she loved that kid. Sam was love and fire and determination- an incredible person.” - Caroline

“Sam was one of the first moms to welcome me into the Little Lobbyists crew. I remember sitting with her at an event and asking her a million questions about her home health nurses. She’s a big part of the reason I’m about to start back to work as a pediatric home health nurse.” -Alison

“Sam was so fun, and so kind. I’ll never forget how she drove over an hour to come to my daughter’s skateland fundraiser for Lymphoma. She showed up with a huge smile and an even bigger hug. She was wearing her derby girl best and had attached rainbow lights to Jo’s wheelchair. It was pure joy to watch her fly around the rink.” - Laura

“I was immediately impressed with Sam's sense of humor and her dedication to saving health care. No matter what, Sam was up for advocacy, even as she and Jo each dealt with their medical needs. I wish I'd had longer with her.” - Jeneva

“Sam was my favorite kind of person from the moment we met: equal parts kind and badass, thoughtful and spontaneous, funny and serious. She was a bold leader who knew she was part of something much bigger than herself, always making others feel welcomed. Truly one of a kind. We bonded over our feisty daughters (often joking about how they were the boss of us) and we never forgot what was truly important.” - Elena

Dear Senator Sinema,

16-year-old Taryn and her mom and dad embrace.

My daughter, Taryn, is 16. She loves to go camping, she loves her family, and she gives great hugs. She was also born with very complex medical needs, as well as cognitive and physical disabilities. You may remember meeting Taryn and me last March when we had the opportunity to speak during a constituent call over Zoom. In that conversation, I explained how I navigated each day with gratitude for the blessing of my daughter, and with worry about managing all the care she needs to ensure she has a fulfilling life. I shared that my husband and I worked tirelessly together to create a safe and happy home, and provided full-time care for Taryn. While we were able to get some in-home services through Arizona’s Home and Community-Based Services programs (HCBS), there is a shortage of home-care providers. Many families will tell you the same. 

Taryn and her father

A lot has changed for my family since we spoke. My fears have been drastically compounded by the unexpected passing of my husband, Taryn’s father, in late August. I’m suddenly faced with being a single parent. We’ve lost our family’s main financial provider and his job benefits, and now I have to figure out what life will look like for Taryn and myself going forward. Without my partner, I know I will need to rely on Home and Community-Based Services more than ever, yet I also know the care workforce is in a state of crisis, made worse by the COVID-19 pandemic. Without full funding for the Better Care Better Jobs Act in the Build Back Better reconciliation bill, Taryn and I, along with thousands of families like ours, will be left behind to try to endure without access to critical life-saving care. 

When we met with you last March, you assured us that you knew good policy for HCBS was important. You said that we could count on you, and I believed you. But now, without any explanation, you are withholding support for the very policies my family needs. I struggle to understand what part of this policy you have an issue with, because when I look at the financial analysis, it makes good fiscal sense over the next 10 years. The Better Care Better Jobs Act and the Build Back Better agenda will create jobs and allow those with disabilities and the elderly to get the care they need in their own homes and communities (which costs significantly less than institutional care). President Biden’s caregiving infrastructure plan will also allow caregivers to return to work, and it will contribute to the next generation of workforce development.  

Dawn and Taryn in a zoom meeting with Senator Sinema, members of Little Lobbyists, and her staff.

I know there is no such thing as a perfect policy, but your responsibility is to create and pass policies that improve lives in Arizona. As do many Arizonans, I believe the Build Back Better plan does just that. To remind you, roughly 65% of Arizona voters support the 3.5 trillion Build Back Better plan, with over 80% of your constituents supporting investment in Long Term Care. Continuing to stall threatens the lives of Arizonans with disabilities and Arizona’s elderly; that’s cruel and unacceptable. I urge you to consider who you are harming by not supporting this plan and remember that you represent Arizona voters first.  

As I have said before, I am available to talk with you anytime about the effects of policy on my family’s day-to-day life. Finally, I leave you with the words my daughter carefully programmed into her communication device last March to share with you. Taryn told you, “Your work is important.” Please remember that, and vote for the support our families need.

Your constituent,

Dawn Bailey
Registered Voter,
Chandler, AZ

Dear Senator Warner,

There is a particular feeling, a whole set of sensations, ranging from shakes, sweats, feeling of rawness inside my body, aching bones, swollen lymph nodes under my chin and arms, nausea and weak/painful muscles that I get when my body is dumping thousands of white blood cells all at once from my lymph system into my bloodstream. It is awful and exhausting. This morning, even after a night's sleep, my legs and neck and arms ache badly and I feel a physical weakness that is hard to describe.

I say this here, in public, because today I have to care for my adult son who is disabled, and lifting him will be dangerous for us both, painful and exhausting for me. I will cook for my son, feed him, and assist with every single thing most people do without a thought. Today I will also support my daughter, who has a disability, too. I have done this in one way or another for nearly 30 years, and since the pandemic began, returned to supporting full time, every single day, one or both disabled family members. Since April, I have done this while also being treated for cancer, and I have continued to work throughout.

This was initially going to be an apology for not continuing later into the night last night, reaching out to people who might contact Senator Mark Warner about his intention to leave caregiving out of the infrastructure bill. But, no. I will not apologize.

Jill Jacobs with Senator Warner

Senator Warner, you may not remember me, but we worked together a whole lot when you were Governor of Virginia on Medicaid Home and Community Based Services (HCBS). Here is a photo of us together in your office one day when I came with my friend Keith to talk about HCBS. That day we talked about the value of caregiving, of caregivers, to disabled folks and their families, to communities, to society, to the economy. My family and I ask that you recognize again now that Caregiving is Infrastructure.

Since Covid began we have faced an ever-increasing caregiver crisis in this country. For my family, we are now finally 60% staffed. 60%. With my years and years of experience navigating the system, we are finally 60% staffed. Why? Because there are no caregivers anymore. Why should there be? We Americans disrespect caregivers. We called them 'heroes' during Covid, yet demonstrate by our actions, how we really feel. We view caregivers as worthless. We do not pay them fairly nor properly, offer zero health insurance benefits, no leave, no training, no career advancement. The pandemic's added risk of death finally broke the system. We need to fix this now.

The caregiving crisis is real and will only get more real as we face the daily care needs of an aging population and added numbers of Covid survivors.

I realize there is huge pressure now to make this Infrastructure bill pass and I appreciate and honor your work in a bipartisan way to get to that point. However, doing it on the backs of disabled people and their families, by not supporting caregivers, is taking a serious risk with human lives, the very people who have suffered and lost so much during Covid. And it harms the whole community, our country, our economy because this is a huge area of need right now, of potential employment, of people working and paying taxes, buying products, spending money, in every city and town in this country. Caregiving allows family members and many disabled folks to work, too, which diversifies our investment and increases our tax payments and spending. The caregiving spending in this bill is an economic investment in people, in cities and towns and states in a real, solid, human way.

Senator Mark Warner, find another way to reduce the amount of this Infrastructure bill. Keep caregiving in the bill and let's see HCBS flourish, create jobs, create community activities and living and spending.

Let's talk Senator.

Your constituent,

Jill Jacobs

P.S. For anyone reading this, I ask you to reach to Senator Warner, too, as well as anyone who represents you, and let this be known.

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Jill Jacobs has been working for disability justice for 28 years. She’s the Executive Director of the ENDependence Center of Northern Virginia (ECNV), one of the oldest Centers for Independent Living in the Country. Jill is a Social Worker with 22 years of experience in health and human service policy, programming, analysis and service delivery systems. She is a graduate of University of Texas and was trained by US Army Social Work Services at Fort Hood, Texas. Jill is also an activist, artist, mother of four, grandmother of three, and a resident of the Commonwealth of Virginia.

Emma, a little girl with blonde hair and blue eyes and a trach, and her mom Stacy a blonde haired blue-eyed woman, embrace while wearing blue “Caregiving is Infrastructure Little Lobbyists T-shirts.

In many ways, my family is like any other.  We want our children to grow; to love and be loved; to do well in school, and make their way in the world.  We want them to be okay after we’re gone. But for my family, none of these things are possible without support. Frankly, we wouldn’t survive without Home and Community Based Services (HCBS), specifically, in-home nursing.  

Our twins are joyful, rambunctious, and the lights of my life!  Sara Bean is a nature lover.  She is happiest when she’s splashing in the water or digging in the dirt. Emma lights up the room with her smile, she has surpassed her medical team’s expectations.  When they were born at 28 weeks via emergency c-section, their birthdays were too much to hope for.  

Emma can do great things!  She loves therapeutic horseback riding, and she’s building stamina to play with her twin sister.  One thing she has never done is take an unassisted breath. Emma lives with an artificial airway through a breathing tube as an outcome of their premature birth and prolonged respiratory assistance.  She eats through a feeding tube that was surgically placed when she was 3 months old. 

It’s hard to describe the relentless hypervigilance that comes with an artificial airway.  When it’s dislodged, Emma is immediately in crisis. I’ve seen the light go out in her eyes as we scramble to reinsert her breathing tube.  

We have family and friends who love us and celebrate the girls' milestones with us but only my husband and I are airway-trained, unpaid family caregivers who’ve forged life-saving skills through fire, and her team of in-home nurses who have chosen caregiving as their profession.  All of Emma’s nurses are trained, licenced and capable professionals. Most are women of color and immigrants who provide vital services, yet have been historically undervalued and underpaid. This means some families experience a turnstyle of rotating caregivers, losing important consistency of care.

 I had to leave my career when my girls were born, and I long to return.  For me to be able to get back to work, Emma needs robust support to survive and thrive.  That can only happen by fully addressing the inequities we clearly see exist.  When you hear people say #CaregivingIsInfrastructure, this is what we mean.  

My daughter’s survival depends on Home and Community Based Services being well-funded, implemented, and protected.  Included in the $400 Billion budget in the American Jobs Plan, we need Congress to ensure dedicated funding for the expansion and improvement of these vital services, including increased availability AND resources to ensure that caregiver jobs provide promising career paths, and liveable wages.

I have to admit, it was a tough pill for me to swallow when I came to understand that I am not enough.  Despite my utmost effort, I cannot give Emma and Sara everything they need.  The current state-level patchwork of eligibility, services and funding means that if we need to move for my husband's job or to be closer to family, we could lose access Emma needs to stay home with us - where she belongs. 

Studies confirm that Home and Community-based Services save lives and create better long-term outcomes for children and adults. Access to HCBS affords disabled people of all ages the civil rights they are entitled to - the self-determination to choose where they want to live. Because of the pandemic, we are in a rapidly expanding public health crisis,  and are only beginning to confront the exacerbated inequities and widening gaps in infrastructure our country is facing.  

We need our legislators to protect American families; to provide relief and support; to fix broken systems and do the job we elected them to do.  My daughters are just 7 years old and have long lives ahead of them. With our legislators' urgent commitment to improving infrastructure, in the future we’ll hear more stories of self-determination and fulfillment.

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Stacy Staggs is mom to Emma and Sara and Little Lobbyists Director of Community Outreach.

I first heard Sister Simone speak at the Women’s March in Washington D.C. on January 21, 2017. Like many people on that unseasonably warm winter day, I’d never been to a protest march before. I was unsure what to expect, and uncertain if I belonged. 

Sister SImone on the jumbotron at the Women’s March. Photo from networklobby.org

As I made my way toward the Capitol I joined a growing sea of pink hats and smiling faces. People carried signs quoting Mother Teresa and Dr. King, little girls in kitten-eared beanies bobbed above the crowd upon their mother’s shoulders, and members of the local Black church offered marchers water, granola bars, and words of encouragement as we passed.

By the time I reached the edge of the Mall my nerves had dissipated. The crowd slowed to a stop, and the clear voice of a smiling woman with a neat gray bob rang out from the nearest stage. 

As I listened I realized she was quoting scripture:

“... they say that we were gathered in one place - frightened and afraid … afraid to go out … and then a mighty wind came. A mighty wind that stirred the hearts and lifted the courage and let people know we’re not alone. We’re together. We’re together regardless of our faith, regardless of our color, regardless of who we define as our neighbor. We are all neighbors to each other and that is the deep truth our nation was founded on. We are our sister's keepers. We are our brother’s keepers. It is that truth that will help us to mend the gaps in our society.”

In that moment, I was transported back to my all-girls Catholic high school days in Baltimore City, where the Sisters of Mercy filled our heads and hearts with the knowledge that we were put on this earth to make it better. I was shocked, yet equally unsurprised, to learn the speaker was a Catholic sister – once again calling me to be a happy warrior in the mission for social justice. 

I knew I was right where I belonged.

That day, Sister Simone gave me my marching orders and I’ve been following them ever since. In our quest to make this world a better place through the work of Little Lobbyists, Sister Simone has been a constant support and source of inspiration. 

Sister Simone stands to my right, next to Elena Hung and Ady Barkan, as I speak at a press conference in the Capitol at the invitation of then-Leader Nancy Pelosi.

Later that same year, in December 2017, Sister Simone stood by my side as I spoke at my first “big” press conference with then-Leader Nancy Pelosi. Sister Simone nodded in quiet encouragement as I asked Congress to protect our children with complex medical needs and disabilities. She later invited us to her office at Network Lobby, and asked us to teach her organization about our children and what they needed. Over the next four years, we found there was always room for our families on Network Lobby’s national “Nuns on the Bus” tours, and at stop after stop Sister Simone lifted our families’ voices on her platform. She lent us her strength and amplified our message, adopting our cause as one of her own.

This month, Sr. Simone is retiring as Executive Director of Network Lobby. Though I know we Little Lobbyists and so many others will miss her leadership, I also know she will always be with us. I can think of no better way to honor her than by recommitting ourselves to following her charge –  

“So my friends, can we commit in this moment to exercise joy, to claim our passion, to have curiosity about our neighbors and then, share it around. Because if we each do our part, we the people will triumph, we the people are what our nation needs, and we the people will make the difference. Let’s do it together.”

Thank you, Sister Simone. 

Click here to listen to Sister Simone’s full speech at the Women’s March in Washington D.C., January 21, 2017: https://youtu.be/wcrbgSKF80U

Elena Hung and Sister Simone

Elena and Sister Simone hug at a Nuns on the Bus tour stop on a sunny day with a blue sky and palm trees in the background.

Nuns on the Bus Tour Stop

Elena stands at a wood podium with members of the Nuns on the Bus tour stop behind her and Sister Simone to her right.

Sister Simone and Abby

Sister Simone hugs Little Lobbyists Abby who is seated in a wheelchair. The Nuns on the Bus tour bus and a small crowd of people stand behind them.

Erin Gabriel speaks at the Nuns on the Bus tour

Erin holds the mic as she speaks at the Nuns on the Bus tour stop in Pennsylvania, her daughter Abby and members of the Nuns on the Bus group are beside her and the tour bus is behind her.

Angela and Myka at the Nuns on the Bus tour stop in CA

Little Lobbyists Myka and her mom Angela speak at the Nuns on the Bus tour stop in California with Sister SImone and members of the Nuns on the Bus tour group.

Nuns on the Bus Tax Justice Truth Tour

Little Lobbyists Simon, and his service dog Tigger are at the Nuns on the Bus Tax Justice Truth Tour. Sister Simone, Simon’s mom Laura Hatcher, and his Aunt Tess Veloso stand behind him.

December 2017, Leader Pelosi's office

From left to right: Little Lobbyists Simon, his Dad Brian Hatcher, Sister Simone, Laura Hatcher, and Ady Barkan in then-Leader Pelosi’s office before a press conference in the Capitol.

Little Lobbyists Moms and Sister Simone

Little Lobbyists moms Erin Gabriel, Tasha Nelson, Elena Hung, and Stacy Staggs stand with Sister Simone for a quick selfie in the Capitol

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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. 

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

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

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

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

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

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

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

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

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

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

Louisa helping her family with yard work.