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

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

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

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

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

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

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

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

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

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

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

Forward with hope,

Liz and Lauren

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

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

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

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

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

Here’s Peter Witzler’s assessment:

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

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

Peter:

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

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

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

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

Keir: 

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

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

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

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

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

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

Al Wopat {image description: A man with light skin, short dark hair, and a hint of beard and mustache wears a gray t-shirt with an image of Mickey Mouse. He stands in front of a lake framed by many trees.]

Self-directed or consumer-directed services are an increasingly popular option among state Home and Community-Based Services (HCBS) waivers. The Self-Directed Advocacy Network of Maryland, Inc., (SDAN) calls self-direction, “Living the life you want.” Jeneva interviewed Alicia Wopat, President of SDAN, to learn more about the group’s advocacy. 

Tell me about Al and your family.

Al is a foodie! He eats every vegetable under the sun, and he’s happy to eat whatever his dad and I cook up. He loves curbside pickup, picnics, and hiking. During the pandemic, he’s been exploring different types and preparations of foods. Al has grown his skills by ordering online. Sometimes he sneaks in an extra order of mozzarella sticks! Al also loves the Pretty Boy Reservoir, which is near us in Baltimore County. He likes the feel of water and its sound. 

Al is 28, and he is Autistic. He is extremely visual and sees things that most of us don't see. When he was a young child doing puzzles, he didn't need the picture to complete them. He was seeing the shapes. I don't think he sees the forest so much as all of the trees. It's a different way of looking at the world. We've been trying to see the world the way Al sees it, and to use that to his benefit. 

Tell me how SDAN started and how you became involved. 

I joined SDAN just after it started in 2016 when Maryland’s Developmental Disabilities Administration (DDA) began proposing changes to our state’s waiver. We became active. We created a website, started tweeting, and made it our mission to get the word out to the community at large. SDAN has become a voice for participants and their families to ensure that participant choice and control is the mantra in Maryland, and that paid family support is respected and continues to be an option.  

What challenges have self-directed participants faced in Maryland in recent years? 

“Self-Direction and the Good Life” [image description: A man with a Hawaiian-style shirt stands next to a young woman with shoulder-length black hair who wears a scoop-neck navy blue top. The background is an office setting. Both people are light-skinned.]

SDAN has worked hard to level the playing field for those who want to manage their own lives. Marylanders who self-direct their services have faced barriers to the flexibility and choices to which they once had access. Among these are access to overnight support staff, appropriate support broker hours, nursing support, and budget lines for administrative support common to traditional services, such as overhead expenses and house managers. 

Most concerning, the specter of competency assessments came up, which undermines the work disability activists have done to dismantle institutional settings. In fact, CMS guidelines for self-direction presume competence for all participants and do not require states to administer competency tests. 

SDAN has a bill in the Maryland General Assembly to address this, The Self-Direction Act of 2022. What did it take to get legislators involved?

We worked hard with the DDA to find solutions first. But, eventually, we turned to our state legislators for help. Delegate Karen Lewis Young and Senator Susan Lee took an interest in our families. This year will be the third time a bill about self-direction is heard in the Maryland Legislature. This past summer, Delegate Lewis Young created a legislative study group to gather information from the community and make a series of recommendations. 

SDAN is proud to support Maryland legislation SB868 (introduced by Senator Lee) and HB1020 (introduced by Delegate Lewis Young), which should restore flexibility and participant choice and control to Maryland’s self-direction program.

Alicia and Al Wopat [image description: A mother and her adult son, both with light skin and dark hair, pose at the beach. The mother is looking into the camera, the son looks away with a hand up toward his ear. He wears a white t-shirt with red lettering.]

Do you think The Self-Direction Act of 2022 will pass this session and become law? How can Marylanders support the bill?

We are hopeful the third time will be the charm. If you are a Maryland resident, you can contact your state legislators and ask them to support SB868 and HB1020. You can download a letter template here. Our one-page summary of the bill can be found here. 

If you’d like to do more, you can provide written testimony by establishing an account on the General Assembly’s website and submitting your remarks within the timeframe for each bill. 

You can also join SDAN!  

How have you seen SDAN members engage in self-advocacy? 

SDAN has two self-advocates on our board, Sunny Cefaratti and Carmen Houston-Ludlam. Some self-directed participants are willing to provide oral or written testimony, and others who need more support don’t do that in a traditional way, but make their needs known, too. Al is like that–he’s very capable of telling you what works and doesn’t work, but he’s not into giving formal testimony for hearings and so on.

How has advocacy given meaning to your life?

I'm going on 65. My driving force right now is setting things up so Al can be happy when I’m gone. So my daughters can monitor him, but still live their lives. That's my motivation for putting my whole heart into this. My motivation is somewhat selfish; it’s for my son. But the good news is, by doing that, I'm helping a lot of other people who are in the same boat.

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

The worst thing about the pandemic has been the lack of caring for others. I am literally stunned and disappointed by people's attitudes. That is the opposite of advocating, and that's why I guess it came to mind. So I’d say that advocacy is the simple act of caring about someone other than yourself.

SDAN at Maryland’s General Assembly, pre-pandemic [image description: A group of 20+ people pose in three rows in an office building’s atrium. The floor tiles are white with smaller black tiles interspersed. Four large white columns in a classical style dominate the background. The persons in the photo wear work-casual clothing and are dressed for winter. In the first row are several persons who are wheelchair users.]

[This interview has been edited for clarity and concision.]

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Alicia Wopat is a resident of Monkton, Maryland and the proud mom of three adult children. She is a passionate advocate for those with developmental disabilities, and works to ensure happy and fulfilling lives. Alicia began working with SDAN in 2016, and currently serves as Board President. She has also served as a Board Member with Pathfinders for Autism since 2015. She has a background in Real Estate as well as finance and investments. She excels at research, and is thoughtful and creative when it comes to problem solving.

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Jeneva & Rob Stone [image description: A mom with light skin & blonde hair poses with her son who is seated in a wheelchair, wearing a red shirt and ball cap. The mom wears a grey dress and blue print scarf. The backdrop is a red brick wall in an office building.]

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

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

Photo montage, clockwise from upper left: Matthew poses in the Kentucky state legislature; Sherry & Matthew; Matthew’s long-term goals; Matthew cooking. [image descriptions: Snapshots lie on a countertop—A young man with light skin & a blue sweater vest and button-down shirt poses in a hall filled with desks; a mother with short hair, a red jacket, red scarf and white blouse poses with a young man in a light blue button-down shirt; a computer screen with the words, “Matthew’s Longterm goals / I like go to college to be chef / work at Mexican restaurant as a chef / work with my mom”; the young man cooks at a stove wearing a red chef’s hat.]

Share the Journey with Jeneva: Sherry Pickett Gets to the “Heart” of Advocacy

Sherry Pickett has a Master’s Degree in Education, specializing in mental health. She’s worked in the mental health field for the last 18 years, providing Case Management Services and Therapy/Parenting Classes. Now her career focus is advocating in her home state of Kentucky. She loves every minute of it. Her hobbies include reading paranormal mystery books and painting. She enjoys summer cookouts by the waterside in the beautiful Lake Cumberland Area of Kentucky. She’s also a huge fan of University of Kentucky sports, the Cincinnati Reds, and Cincinnati Bengals.

Sherry spoke with Jeneva about her advocacy at the state level in Kentucky.

Tell me about your family.

Matthew is an only child, and he is 22 years old. He has a service dog named Bella. She's a Dark Chocolate Lab. She's 3 years old. Matthew enjoys cooking and going to the beach. He’s involved in the Special Olympics, and he enjoys going out to eat and trying new restaurants. His latest was Korean. He enjoys being involved in his community as an advocate, along with me. Before Covid hit, Matthew was training at a local diner as a cook. Matthew will be returning part-time once Covid numbers go down in our county. 

 Tell me more about Matthew’s complex medical needs and disabilities.

Matthew was prenatally diagnosed with Tetralogy of Fallot (TOF), a rare heart condition. Ninety percent of children with TOF die before they reach the age of one. Matthew also has DiGeorge Syndrome, which affects his heart and development. He has a history of seizures, too. Matthew is followed by many specialists, including hematology, nephrology, pulmonary, and neurology. Matthew is legally blind in one eye, so he needs assistance going up and down stairs and with transfers, such as grass to gravel. 

Tell me about your advocacy with the American Heart Association (AHA). How did you get involved? 

In 2015, I began helping our Kentucky Chapter with their CPR bill. The purpose of the CPR bill was to have students trained in CPR before they graduated high school. We had a 3-year battle with this bill. It always passed the House with no issues. But each time it got to the Senate, it failed. When we got a new State Senator in my district, I, and a representative from our Kentucky AHA Chapter, met with him and expressed our concerns and struggles getting the CPR bill passed by the Senate. Our State Senator is the Education Chair, and he co-sponsored the bill on behalf of Matthew. 

What did it take to get it passed in the Senate? We had a high school student from Louisville who had a heart attack on school grounds and was given CPR and he survived. This student testified before the Education Committee. We also had statistics and data to back up our bill. The bill passed both the House and Senate on January 28, 2016. Kentucky became the 29th state to pass such a law. 

What did you find most challenging about approaching your legislators? What advice would you give to other people about getting involved in state policy initiatives? What set of skills do you need to help get legislation passed? 

The most challenging was “how do we present this bill to the Senate committees expressing its importance and our concerns.” Money was also an issue: What was this going to cost the state in terms of the CPR classes? 

In my experience working with the Kentucky legislature, you make sure you have your information, documentation, and data stats ready. Remember, they work for you, the constituent. I’ve been blessed in Kentucky. I've been able to work across the aisle on both sides. It’s not smooth sailing. But you’ve just got to sometimes fight for your family. Don’t be afraid to speak out. 

 How have you engaged Matthew in self-advocacy?

Matthew and I advocate together! He’s not shy; he attends meetings with our state representatives at our state Capitol. He’s well known by staff at the Capitol and by our Legislators. He lives life to the fullest. He enjoys advocating. 

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

Advocacy matters; don’t be afraid to let your voice be heard. 

[This interview has been edited for length and clarity.]

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Jeneva & her son Rob on a trip to Capitol Hill. [image description: A mom with light skin & blonde hair poses with her son who is seated in a wheelchair, wearing a red shirt and ball cap. The mom wears a grey dress and blue print scarf. The backdrop is a red brick wall in an office building.]

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

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

Brynleigh Shillinger, age 8. [image description: A young girl with light skin, dark hair and a purple hair bow poses in an outdoor chair with teal cushions. She holds a purple sign that reads “Brynleigh’s Act.”]

My daughter Brynleigh is a happy girl whose smile brightens up a room, She is in first grade and absolutely loves music therapy. She doesn’t like eating veggies, but will polish off a box of chicken nuggets before we finish our drive back home. Brynleigh was diagnosed at nine-and-a-half months with  Epilepsy and Tuberous Sclerosis Complex (TSC), which is a rare genetic disorder that causes tumors to grow in major organs. TSC is the leading genetic cause of both Epilepsy and Autism.

Brynleigh and I are also advocates for the Seizure Safe Schools Initiative in Maryland, promoted by the Epilepsy Foundation for implementation in all 50 states. Our family has advocated with the TS Alliance and the Epilepsy Foundation since our daughter’s diagnosis. We’ve always had concerns about her transition to school. At school, who would be trained to respond to her seizures?

Approximately 1 in 10 people will have a seizure in their lifetime–a teacher, student, or even a school nurse could someday benefit from others nearby who know how to respond. This is what the Epilepsy Foundation’s Seizure Safe Schools Initiative is all about. In 2018, Kentucky became the first state to pass a Seizure Safe Schools bill. Since then, similar legislation has been passed in 12 states: AL, CO, IL, IN, KY, MN, NE, NJ, OK, TX, VA and WA. Another 10 to 15 states have bills in some stage of the legislative process. 

Lauren and Sean Shillinger with Diana Briemann, an advocate and teacher who also has epilepsy. (Pre-COVID photo) [image description: A tall man with light skin and grey hair stands behind two women with light skin, one with blond hair and one with red hair. Each is dressed professionally and wears a purple item of clothing to symbolize epilepsy awareness.]

Maryland needs to join the ranks of states with Seizure Safe Schools. There are 59,900 people living with epilepsy in Maryland, of which 7,900 are children and teens. In 2019, my family approached our state legislators, Senator Ronald Young and Delegate Ken Kerr, on behalf of the Epilepsy Foundation, asking them to be co-sponsors of Brynleigh’s Act. After hearing our family’s story and learning about the prevalence of epilepsy in our state, they agreed and Brynleigh’s Act was first introduced in the Maryland General Assembly.

We are hopeful that this year, 2022, will be the year that Maryland finally passes our bill! Brynleigh’s Act would train school personnel on seizure detection and first aid response on a biennial basis; mandate Seizure Action Plans to be on file for every student diagnosed with epilepsy or a seizure disorder and require those plans be available to all personnel; ensure the administration of medications approved by the U.S. Food & Drug Administration; and include a Good Samaritan clause.

Here’s how you can help support Seizure Safe Schools! In Maryland, contact your Maryland State Senators and Delegates to share your story and ask them to vote YES on Brynleigh’s Act (HB136 & SB299) to make our Maryland schools seizure safe now!

In other states, connect with your Epilepsy Foundation chapter to support their effort. Most states have already started this process and are actively looking for families to share their story.   

Sharing your story can turn adversity into advocacy, and help make a big impact in your community—it could even save a life!

A group of Epilepsy Foundation of Maryland members pose with local physicians and bill co-sponsor Delegate Ken Kerr in the Annapolis General Assembly. (Pre-COVID photo) [image description: A group of 14 adults, both men and women of a variety of skin tones, pose in an atrium in front of a hearing room. Many wear a purple item of clothing. Double doors are open behind them and a sign at the top of the doors reads “Education, Health and Environmental Affairs Committee.]

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After graduating from Elon University with a degree in Corporate Communications, Lauren Shores Shillinger had a 12-year career in the electronic healthcare industry. Lauren and her family  have volunteered, advocated, and fundraised for TSC and Epilepsy. In 2017, Lauren became Chair for the TS Alliance Community Chapter in Maryland and began serving on the TS Alliance committees for Government Relations and Community Outreach. She annually participates in the March on Capitol Hill, and has planned and implemented the first TSC Maryland Day of Advocacy and Awareness in Annapolis. Lauren is currently advocating for Brynleigh's Act, which would make Maryland schools seizure safe. She has also served as the Walk Chair for the National Step Forward to Cure TSC walk and various other fundraising events. Lauren is completely dedicated to making a difference in not only her daughter Brynleigh’s life, but all who are affected by TSC and Epilepsy!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Brynleigh Shillinger [image description: A young girl with dark hair and a purple hair bow poses in a wicker outdoor chair with teal cushions. She holds a purple sign that reads “Brynleigh’s Act, SB225, HB370, #Seizure Safe Schools MD.”]

Bio: After graduating from Elon University with a degree in Corporate Communications, Lauren had a 12-year career in the electronic healthcare industry. Lauren and her family  have volunteered, advocated, and fundraised for TSC and Epilepsy. In 2017, Lauren became Chair for the TS Alliance Community Chapter in Maryland and began serving on the TS Alliance committees for Government Relations and Community Outreach. She annually participates in the March on Capitol Hill, and has planned and implemented the first TSC Maryland Day of Advocacy and Awareness in Annapolis. Lauren is currently advocating for Brynleigh's Act, which would make Maryland schools seizure safe. She has also served as the Walk Chair for the National Step Forward to Cure TSC walk and various other fundraising events. Lauren is completely dedicated to making a difference in not only her daughter Brynleigh’s life, but all who are affected by TSC and Epilepsy!

Tell me about your family. 

We enjoy advocacy, fundraising, and spreading awareness for TSC and Epilepsy! Sharing our journey spreads awareness while helping other families connect and share resources. Our family loves vacations to the beach and trips to amusement parks like Hershey and Disney. 

Tell me about Brynleigh. 

Brynleigh is a happy girl who’s smile brightens up a room! She’s a courageous warrior who surprises us with her kindness towards others. She always thanks her medical team when they are checking her vitals or drawing her blood. She is in Kindergarten and absolutely loves music therapy. We have noticed she can memorize and learn more skills when they are paired with music. She doesn’t like eating veggies, but will finish a box of chicken nuggets before we finish our drive back home. She is obsessed with all things Disney … rides, music and movies. She enjoys swinging and her rocking chair. She is a wonderful big sister and loves to play with her little “sissy.”  Brynleigh got an adaptive bike this past year, so we take lots of bike rides and family walks when the weather is nice.

The Shillinger Family. [A father poses in white shirt and purple tie, a mom holds her daughter—both mother and daughter are wearing deep blue clothing.]

When Brynleigh was born, I became a stay-at-home mom. Brynleigh was diagnosed at nine-and-a-half months with Tuberous Sclerosis Complex (TSC) and Epilepsy, which is a rare genetic disorder that causes tumors to grow in all of your major organs. Brynleigh has tumors in her brain which cause Epilepsy, and she had brain surgery in 2016. TSC is the leading genetic cause of both Epilepsy and Autism. Brynleigh was diagnosed with TSC and Epilepsy in 2014, and, later, was diagnosed with Autism.

Explain Brynleigh’s Act and why this legislation is so critical for children with epilepsy. Have similar bills been passed in other states? How did you become involved with the Maryland legislation?

Yes, this is a nationwide initiative that's supported by the National Epilepsy Foundation. Seizure Safe Schools Legislation has already been passed in six states: Kentucky, Texas, Illinois, Indiana, New Jersey, and Virginia! Including Brynleigh’s Act, Seizure Action Plans (SB225/HB370) in Maryland, there are 17 states with bills in the legislative process.  

We had been advocating with both the TS Alliance and the Epilepsy Foundation since shortly after our daughter’s diagnosis. We always had concerns in the back of our minds about how her transition to school would be handled and how her team would be trained. After hearing about the first state, Kentucky, to pass this legislation, we contacted the Maryland community chapter of the Epilepsy Foundation and asked them if we could start the advocacy project in Maryland … we approached our Maryland legislators Senator Ronald Young and Delegate Ken Kerr of Frederick, asking them if they would agree to be the bill co-sponsors … they immediately agreed and “Brynleigh’s Act” began and was introduced in the Maryland General Assembly!

How can our members help with the effort in Maryland and in other states? 

In Maryland, you can contact your Maryland State Senators and Delegates to share your story and ask them to vote YES on SB225/HB370 “Brynleigh’s Act” to make our Maryland schools seizure safe now! In other states, connect through the Epilepsy Foundation chapter in your state to join their effort and advocacy team. Most states have already started the process and are actively looking for families to share their story and help them to contact their legislators.   

Can you share with us what you’ve learned about advocating at the state level? What are your tips for getting things done and getting involved?

Reach out as a constituent to your district’s representatives … they want to hear from you!  Check out their website to see their background and what initiatives they are working on to figure out their legislative goals. Connect with your Senators and Delegates/Representatives on social media. They often offer ways to connect with their constituents by providing open forum events like roundtable discussions and coffee chats.

Make sure to check with local organizations and advocacy groups on projects so you aren’t starting a project that's already in motion. We are stronger in groups and can make a bigger impact when we support advocacy initiatives that are already in progress, and it's easier than starting on your own. Many groups can connect you with other advocates and legislators working on similar projects while providing valuable resources and support.

How have you engaged Brynleigh in self-advocacy? 

Advocates for Brynleigh’s Act pose in a Maryland General Assembly office building. [image description: Fourteen people wearing shades of lilac, purple and deep blue pose with a Maryland state representative, who holds a sign explaining Brynleigh’s Act. They stand on a white and black marble floor.]

Brynleigh has been so brave and strong throughout her journey! We consider her our advocate-in-training. She’s met with Senators and Delegates. She's joined our family for days of advocacy and awareness, and even attended a bill hearing. When she's not feeling well or events conflict with school/therapy, our family made a photobook of her journey to show our legislators if she isn't able to attend in person. Our family is so incredibly proud of how far she has come and it's amazing to see how her story has helped make such a big impact!

How has advocacy given meaning to your life? 

It’s honestly been life changing in so many ways! It's given me a new passion and purpose in life. It's so rewarding to give back to our community and see our advocacy efforts creating real change. It's also a way for us to be Brynleigh’s voice until she can speak for herself. Brynleigh’s journey with TSC and Epilepsy has been difficult and filled with many challenges over the years. Her setbacks and struggles have also fueled our family to fight for a cure. As a family we advocate for more funding, fundraise for new research, encourage seizure first aid training/education, and spread awareness. We are lucky that we've had the support of the TS Alliance, where we were first introduced to Federal Advocacy projects that turned into state level opportunities. We've also had the support of the Epilepsy Foundation to educate and train Brynleigh’s school team each year since Brynleigh started preschool, which led us to start “Brynleigh’s Act” to make schools seizure safe in Maryland. Together we can make a difference and a huge impact for those living with epilepsy and TSC. We are proud of what our family and community of advocates has accomplished so far and can't wait to see Brynleigh’s Act passed into law!

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

Sharing your story can turn adversity into advocacy, and creating change can make a big impact in your community!

[This interview has been edited for clarity and concision.]

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Jeneva & her son Rob [image description: A mom with short blonde hair wears a blue scarf & grey dress. Her son is seated in a wheelchair with an orange shirt & orange baseball cap.]

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

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

Mallorie and her family. [image description: A family, including a mom, a young boy and a young girl, pose in front of a rustic photographer’s backdrop that includes hewn logs. The family wears coordinating navy blue and white plaid button-down shirts. The family dog, a large white curly-fur breed, poses with them.]

An Open Letter to the Centers for Medicare & Medicaid Services (CMS): 

My name is Mallorie Hatcher from Johnson City, Tennessee. I work full-time as an occupational therapist. I am the proud parent of a nine-year-old daughter, Londyn, and a seven-year-old son, Nolan. As a member of Little Lobbyists, I am writing today to speak on behalf of my son Nolan and all children with complex medical needs and disabilities.

Nolan started first grade this year. He loves dirt bikes, music, vacuum cleaners, and choo choo trains. Nolan has a microduplication on his 17th chromosome. It is classified as a rare chromosome disorder. If you saw him you would assume he is much younger than he is due to his slow growth. 

Nolan has feeding difficulties (requiring supplemental nutrition through his feeding tube), global learning delays, Chiari malformation (requiring yearly MRIs and possible future neurosurgery), and epilepsy (requiring daily medication). He has had multiple hospitalizations and surgeries during his life. He has more than a handful of specialty physicians, and regular speech and occupational therapy sessions in order to help him best thrive. 

Tennessee has a history of being a low-tax and underserved state. For instance, my son Nolan, despite having complex medical needs and disabilities, has never been eligible for any form of Medicaid in the state of Tennessee. In fact, our state falls far under the national average in terms of coverage for individuals with disabilities. Our family, like many others, has been fully dependent on private employer insurance for my son’s care. Medically necessary services like therapy, specialized formulas, and medical equipment are not covered. This in addition to already high deductible and out-of-pocket expenses has put our family in significant medical debt. 

Starting in 2019, our family had the opportunity to advocate at the state level to get a much needed bill passed in our state. I took my children to meet our state legislators, wrote emails, and engaged the public. My family courageously came together with the Tennessee Disability Coalition, the Tennessee Justice Center, and other families and groups, all working to get the Katie Beckett waiver passed in Tennessee, which is specific for children with complex medical needs and disabilities. I no longer felt alone, and families like my own felt heard and supported. We felt as if our leaders were beginning to understand the reality and shortcomings of our state when a family cares for a child with complex medical needs and disabilities. 

Mallorie, at left, poses with other members of Little Lobbyists Tennessee chapter. From left to right, Mallorie, Jessica Fox, Michelle Gross, and Asher. The group spoke at a town hall for Stop the Block. [image description: Three moms wearing grey and teal Little Lobbyists t-shirts pose with a young disabled girl who wears a pink Little Lobbyists t-shirt. One mom holds a framed photo of her daughter. They are in a conference room.]

When learning of Amendment 42 to fund Tennessee’s Medicaid program entirely through a block grant, we felt betrayed. While legislators say that the amendment will not impact the Katie Beckett Waiver for its first three years, Medicaid block grants are historically devastating for individuals with disabilities. For example, prescription medications could be limited, and other caps could be placed on medical care. Block grants will likely limit the number of children ultimately served in the future of the program. In a state that is historically not known for taking care of individuals with disabilities, it is scary to lose federal protections for our children and others with complex medical needs and disabilities. As Little Lobbyists, we advocate for all.

We are scared once again, but we have hope that we will once again be able to come to an understanding that Medicaid is a life saving program (not an experiment) and that our children's lives matter. Along with the Tennessee Justice Center, our families continue to speak out against the use of block grants in Tennessee, and are hopeful that the Centers for Medicare & Medicaid Services under the Biden Administration may yet overturn Tennessee’s decision. I feel reassured that the Biden administration has prioritized healthcare and disability rights. I hope we are able to work together  and put a ban on unethical Medicaid block grants. 

My son has a genetic condition: he will not outgrow this. The reality is that my son will one day grow up to be an adult with a disability. His life will depend on his access to life-saving medical care to survive and thrive to his best potential. 

Access to healthcare should be a human right, not a privilege. A price tag should not be put on any life. My story only gives a small glimpse into why this is a bad idea. Allowing block grants in a state that is already highly underserved is a recipe for disaster and could result in rationing of care among its most vulnerable residents. 

Bottom Line: This is a harmful proposal that cannot be fixed. It goes against the goals and purpose of the Medicaid program. I respectfully urge you not to go forward with this harmful proposal.

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Mallorie Hatcher is a member of Little Lobbyists who worked to get a Katie Beckett Medicaid waiver passed in Tennessee where she lives with her family.

At Little Lobbyists we know our most powerful advocacy tool is our vote. My own children, Collin, Bridget, and Abby, have learned from a very young age that advocacy is not just about working with the legislators you have, but about electing the right people for the job. This year, with so much at stake for our families, supporting and electing candidates to all levels of government who will fight for our children with complex medical needs and disabilities is critical. 

As the Pennsylvania State Chapter Leader, I am proud to announce that Little Lobbyists Pennsylvania endorses the following candidates for the United States House of Representatives. These candidates have demonstrated a commitment to supporting health care, education, and community inclusion for kids with complex medical needs and disabilities. Each of these candidates has a strong commitment to the Affordable Health Care Act (ACA).

Image description: Blue graphic with Little Lobbyists Pennsylvania logo at top. Text reads: “Little Lobbyists Pennsylvania endorses the following candidates for the United States House of Representatives who have demonstrated a commitment to supporting health care, education and inclusion for kids with complex medical needs and disabilities.” On a lighter blue square candidates’ names, districts & photos: “Madeleine Dean (PA-4), Mary Gay Scanlon (PA-5), Chrissy Houlahan (PA-6), Susan Wild (PA-7), Matt Cartwright (PA-8), Eugene DePasquale (PA-10), Kristy Gnibus (PA-16), Conor Lamb (PA-17), Mike Doyle (PA-18). Bottom text reads, “Advocating for kids with complex medical needs and disabilities. www.littlelobbyists.org”

Madeleine Dean standing with Erin & Bridget. Abby is using her speech generating device.

Madeleine Dean (PA- 4), the incumbent, is always receptive to Little Lobbyists families. She has proven to be a true ally for our children with complex medical needs and disabilities, supporting legislation to defend and strengthen the ACA, as well as supporting the Elijah Cummings Lower Drugs Costs Now Act (H.R. 3). She is an original co-sponsor of the CHIPPER Act (H.R. 6797), which would increase federal funding for CHIP programs andsafeguard children’s access to health care during the pandemic. Little Lobbyists mom Christine says, “Madeleine Dean appreciates the inherent value of all individuals, and the need for everyone to be included in their community. She recognizes disability as one aspect of diversity, and understands that health care and education are rights and a vehicle for all Americans to live full lives.”

Mary Gay Scanlon is seated between Kevin and Abby, who are both in their wheelchairs. Little Lobbyists moms stand in the back, with Collin at center.

Mary Gay Scanlon (PA-5), the incumbent, began her advocacy for children at  the Support Center for Child Advocates, where she has served as a volunteer attorney or board member since 1985. Her work continued as an attorney for the Education Law Center of Pennsylvania, where she fought for access to a quality public education and the rights of students with disabilities. At the Education Law Center, she led two class action lawsuits to enforce the rights of students with disabilities. As a congresswoman she focuses on disability rights and voting rights, supporting legislation to strengthen the ACA and lower the price of prescription drugs through the Elijah Cummings Act (H.R. 3). Congresswoman Scanlon authored the Disability Voting Rights Act (H.R. 1573). She regularly welcomes Little Lobbyists for meetings and genuinely listens to our concerns, as well as those of the broader disability community. At her disability town halls, she’s invited Little Lobbyists families to share their stories. Little Lobbyists Freida, age 14, says, “Mary Gay Scanlon cares that I have a future. I admire her for her hard work in making sure I have one.” Little Lobbyists know that Congresswoman Scanlon will continue to listen to and advocate for children with complex medical needs and disabilities.

Chrissy Houlahan stands with Little Lobbyists moms Lisa and Sharon as well as Bridget. Abby is seated in her wheelchair and clapping her hands.

Chrissy Houlahan (PA-6), the incumbent, has been a  strong advocate for affordable healthcare, working to support and improve the ACA through her co-sponsorship of the Protecting Pre-Existing Conditions & Making Health Care More Affordable Act of 2019, the Middle Class Health Benefits Tax Repeal Act of 2019 (H.R. 748), and the Strengthening Health Care and Lowering Prescription Drug Costs Act (H.R. 987). Her constituents report that she is focused on serving the people of her district. Little Lobbyists mom Victoria says, “Representative Houlahan truly cares about her constituents and takes the time to respond to us in a thoughtful way, always keeps us informed, and asks for constituent feedback on important issues.” Little Lobbyists mom Lisa adds, “She is a force to be reckoned with and a joy to have as the voice of her constituents.” Little Lobbyists mom Sharon says, “She hires staff members who share her warmth, intelligence, and empathy, which makes her office a reliable and effective resource we can count on. Her directness and action-oriented manner are refreshing, and it is a joy to work with her.”

Susan Wild speaks outdoors at a podium

Susan Wild (PA-7), the incumbent, has worked tirelessly  on health care issues, including the rights of people with mental health disabilities. Susan is the author and original sponsor of the CHIPPER Act (H.R. 6797), which would increase federal funding for CHIP programs andsafeguard children’s access to health care during the pandemic. She is a sponsor of the Expanding Disability Access to Higher Education Act (H.R. 4577), as well as numerous other bills. She has spoken at many events in defense of our families’ access to affordable health care. 

Congressman Matt Cartwright (head shot)

Matt Cartwright (PA-8), the incumbent, has worked tirelessly to protect the ACA, as well as expand Medicaid. Congressman Cartwright also supports the expansion of disability rights through the Disability Integration Act (H.R. 555), which would give people with disabilities the choice to receive care at home instead of in a nursing home or institution--something that has become increasingly important during this pandemic. Protecting people with pre-existing conditions has been Congressman Cartwright’s top priority since he first ran for Congress in 2012, and Little Lobbyists families know we can rely on his steadfast advocacy for ACA protections for our children with complex medical needs and disabilities. 

Eugene DePasquale (center) standing in front of a blue curtain with a group of Little Lobbyists Pennsylvania families.

Eugene Depasquale is challenging Congressman Scott Perry (PA-10). Congressman Perry has repeatedly voted against our families, including multiple votes to repeal the ACA, while Eugene Depasquale grew up as the sibling of a child with complex medical needs and disabilities, so he understands first hand how policies that affect health care and disability rights can impact a family’s ability to survive and thrive. He has made defending the ACA a priority in his work as Auditor General, and now in his congressional race. Little Lobbyists are excited about his candidacy and the work he will do in Congress on behalf of our families.

Abby meeting Kristy Gnibus at an outdoor event. Abby is seated in her wheelchair between Conor Lamb, kneeling beside her and wearing a face mask, and Kristy Gnibus, wearing a mask that says “Vote.” Abby is smiling broadly and reaching out to touch Gnibus’ face.

Kristy Gnibus is challenging incumbent Congressman Mike Kelly (PA-16), who has repeatedly voted to repeal the ACA. Kristy Gnibus is a mom, teacher, and a cancer survivor who understands what Medicaid and the protections of the ACA mean for families. Affordable health care and a good education for every child are the top priorities of her campaign. She understands first hand the difficulties of navigating the pre-ACA health care system and what is at stake if we lose the ACA now. She believes it is important to lower the cost of prescription medications, so she supports the Elijah Cummings Act (H.R. 3).  Kristy Gnibus has gotten to know Little Lobbyists families and listen to our stories and concerns. In speaking with Kristy, I have found the rare Congressional candidate who already understands, on both personal and policy levels, just how critical Medicaid is to so many families, and especially to Pennsylvania families of children with complex medical needs and disabilities. Kristy Gnibus really gets it, and I know she will hit the ground running when she gets to Congress.

Conor Lamb drumming on his desk in Washington DC with Abby seated in his chair drumming excitedly along with him. Both are smiling broadly.

Conor Lamb (PA-17), the incumbent, has been a tireless ally for Little Lobbyists families, always making time in his schedule to listen to our concerns and proactively seek our opinions on new legislation. Congressman Lamb was one of the first legislators to speak out against the Administration when it tried to deport children with complex medical needs who came here legally for life-saving medical treatment. He is one of the original cosponsors of the CHIPPER Act (H.R. 6797). He has repeatedly defended the ACA and voted for the Elijah Cummings Act (H.R. 3). Conor Lamb has taken the time to develop relationships with and really listen to our children, giving them confidence to advocate for themselves and their friends at the highest levels of government. 

Mike Doyle standing (center) with several Little Lobbyists families in his local district office.

Mike Doyle (PA-18), the incumbent, has been a consistent advocate for health care, and for families of children with disabilities. He regularly makes time to meet with his constituents, including Little Lobbyists, to discuss the issues affecting us. He is the original author of the Autism CARES Act (H.R. 1058) and has been working alongside the disability community to adapt this legislation to be more responsive to the needs of autistic individuals across the lifespan. Little Lobbyists Pennsylvania is confident that Mike Doyle will continue to learn from and work alongside the disability community, fighting for the affordable health care our children with complex medical needs and disabilities need to survive and thrive. 

Little Lobbyists Pennsylvania is proud to endorse these candidates for the United States House of Representatives. We ask that you offer them your support, and most importantly your vote, so that they can fight to protect the health care, education, and community inclusion children with complex medical needs and disabilities need to survive and thrive. 

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Erin Gabriel is Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania.

Olive wearing her mask

Dear Governor Parson,

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

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

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

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

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

Put your mask on, Governor. 

Sincerely,

Julie Kauffman (Olive’s mom)

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

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. 

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. 

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

Jessica Fox and her daughter Claire, age 4

I am a mom.

When my daughter was born with a heart condition requiring a high level of medical care, I became her advocate.

When I realized there were many kids like her, unable to access the resources they need to survive and thrive, I became a leader.

The truth is, I never thought I would be a health care expert meeting with legislators in our state Capitol, but now I am. Because I have to be.

Too often, our policies on health care are made by people who do not understand what it's like to care for a child who has had more doctor's appointments than play dates. That is why I started speaking up and fighting to change our state law.

I started speaking up because of my daughter, Claire, a very happy four-year-old child. She loves to tease her siblings and will pull out all the stops to make them laugh. She loves music and she loves to play dress up. She currently attends an inclusive pre-K program, where she signs her best friend’s name “poppy” by using sign language for “bubble".

In many ways, she’s just a kid living her best life; but unlike most kids, she has spent more than her fair share of time in hospitals, racking up millions of dollars of medical bills in the first two weeks of her life.

We were very fortunate to be covered by my employer’s commercial insurance plan to pay for her medical care. In addition, due to Claire’s extended hospitalization, we also qualified for our state’s Medicaid plan, called TennCare, as a secondary policy. This was necessary because as great as our insurance was, it did not cover everything Claire needed, like her therapies, medical equipment, and surgeries.

Then, one day, just prior to Claire’s 4th birthday, we lost her Medicaid because we no longer qualified. Just like that. I appealed not once, but twice and lost. How could a disabled child be denied access life-saving medical care in America?

I sat in the grocery store parking lot crying one day, and I knew I had to do something.

I have to confess that a year ago, I had no idea who my State Representative was. We all start somewhere. I began a letter writing campaign and asked everyone I knew to join me.

I connected with groups like Little Lobbyists, a family-led organization advocating for children with complex medical needs and disabilities, where I felt encouraged and a sense of community. I made calls to my State Senator. I reached out to several agencies. I attended health care forums. I took notes as candidates campaigned for the mid-term elections.  After tucking my kids in bed, I spent my late nights reading and learning about our state government. I learned about the Katie Beckett program, a Medicaid waiver program that allows medically complex children to live at home with their parents instead of an institution, by waiving the parent’s income. I learned that Tennessee was the only state in the country without this program.

I told my story in several newspaper and television interviews. This past October, my daughter’s face was the front-page center piece article of our local newspaper, talking about why we need the Katie Beckett program.  I joined four other families with children like mine, and we took off to our state Capitol. That day, my husband and I took our daughters to meet various lawmakers who agreed to sponsor a bill that we hope to become a Katie Beckett program in Tennessee.

I remember we sat in a legislator’s office, next to Claire as she rocked in his rocking chair. When you show up with your kid at the state Capitol, legislators are forced to see them with their own eyes. Claire is not a number or statistic; she’s a real child.

Jessica Fox with her family visiting Tennessee State Representative Sam Whitson

Our bill is now progressing in Tennessee’s House of Representatives. This bill, if passed, will ensure Claire can access the medical care she and so many other kids need and for us, that means we give them every fighting chance to reach her their highest potential.

This is why we need to engage our lawmakers. They work for us. They need to understand how policies affect our lives. We are the experts on our children. We are the experts on policies that affect our children.

We are constituents. We are real people, who care about our loved ones. We are spouses and siblings and friends and neighbors, and yes, we are parents. It is time for us to speak up and lead.

Some of the Tennessee families fighting for a Katie Beckett Medicaid waiver in their state.

Jessica gave this talk on the Spark Stage at the Urig Summit in Nashville on March 30, 2019.