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.

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

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

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

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

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

What are parents to do? Continue to mask up. 

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

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

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

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

Angela Weddle [image description: A BIPOC person smiles into the camera. She wears round, metal-framed glasses and a grey shirt. Her hair is styled as a narrow strip of curly brown hair, with the rest of the head shaved on both sides.

Jeneva Stone has the honor of interviewing Angela N. Weddle, a professional visual artist who is autistic with cerebral palsy and congenital right hemisphere brain damage. Weddle is a neurological anomaly and savant, who is not supposed to have any artistic ability but always has. Weddle has mentored and taught students of all ages about poetry and art. 

Weddle is a contributing blogger, artist, animator, and board member of The Art of Autism. She has lectured about autism awareness and advocacy to local Texas organizations and corporations such as H.E.B. Weddle is known for her sketchbooks and digital art. She has been mentioned in the San Antonio Current, as well as interviewed on Spectrum News, and PopSugar. She has contributed animation/interviews to the University of Exeter’s ExDx Film project, and has been the featured artist in the literary journals Queerly and Salamander. Her cover art is featured on the CD of All Without Words by composer Justin Morell and multi-Grammy winning composer and musician John Daversa. Her poetry has been published in Barking Sycamores: Year One. For more on Weddle’s art, visit her website. 

Tell me about yourself.

I’m a BIPOC, queer, autistic, and disabled visual artist, poet, and autistic advocate originally from New Orleans, LA. I currently reside in San Antonio, TX. 

How did your interest in visual art develop? What do you consider to be your first artwork?

I had immediate interest from the moment I picked up a pencil. I started drawing obsessively for 4-5 hours a day on my own at 3 years old and considered myself an artist from age 4 onwards.

And I was always interested in representational art and realism; even at that age I would find myself frustrated when looking at the drawings other children did. I knew trees weren’t just round blobs with sticks for trunks. I knew leaves had individual shapes and the details and texture that made up the world. I was perplexed that other kids didn’t see it or so I thought. I strove to include that level of faithfulness from my earliest memories. No one told me how to draw or how or why to include those things.

 My first artwork was a drawing of 4 ball gowns, it was the drawing that my mother really took notice of. She didn’t get upset that I interrupted her on the phone to show her. She realized something was there.

What are some connections between your artistic practice and your lived experience of disability?

Everything is connected to it. Growing up undiagnosed both as autistic and with cerebral palsy and congenital right hemisphere brain damage; I didn’t know that I wasn’t supposed to have the motor skills to be able to draw even badly. But I did know I had motor skills deficits, in general. 

Being severely physically and verbally bullied in school, art was a way for me to tune some of that out. The more details included, the more time the drawing took; taking me out of that world. I was naturally interested in details but the above definitely informed that.

Also sensory issues. When I was in pre-k I remember they had us do a finger painting. I didn’t like the sensation of paint on my hands. I don’t like how glue and paint feel now, though I tolerate it better now. But I was far more upset that they didn’t really let us paint it. When it was my turn, they chose the colors and they placed my hands down on the paper. I could live with the uncomfortable sensation of the paint on my hands but was internally fuming that they thought I was incompetent to create a painting. 

“Woodlawn Lake, Early Autumn,” Sennelier Oil Sticks and Cold Wax Painting on Wood Panel, 10x10 inches, 2020. [image description: Impressionist techniques depict a pond with vegetation surrounding it, tall trees to the right, and clouds in the sky upper left. Brushstrokes are prominent.]

This feeling returned in first grade. We were to draw a tree. I had been praised for drawing the trunk and thought I would get to paint the leaves. Only to have the teacher do the leaves. My mother and grandmother loved it but I remember being perpetually frustrated because the teacher didn’t do the leaves right. I perseverated on that tree for 20 years, eventually painting the version I originally envisioned maybe 8 years or so ago. 

In addition having cerebral palsy, carpal tunnel in both wrists, spinal damage, fibromyalgia, other joint issues, and being unable to drive also inform my work. I tend to work in smaller sizes or digital because larger works are physically painful for me to do. I have special interests with certain formats like sketchbooks, accordion fold books, ink, digital, water media. 

And of course since the U.S. disability system is archaic; their concepts of disability, mixed competencies, self employment; there are limitations to what I can do, earnings, transportation of works, many galleries aren’t accessible depending on whether and what kind of mobility equipment I am using. The types of art I make are all centered around a way to keep working for a brain and body that don’t function in traditional ways.

Even something like learning perspective took over 10 years for it to click; from a website that explained it in a non traditional way. I’m not a linear learner at all. Difficult things tend to be easy for me and easy things tend to be difficult. With NVLD-Non Verbal Learning Disability and profound math and spatial difficulties, something as simple as measuring a painting or doing a non standard sized work or sculpture can be very challenging or impossible even, but there is also an intuitive grasp of patterns as a pattern based thinker, fractals despite the inability to do most math, counting on my fingers, and despite being hyper verbal, visual art is my purest form of communication. Words are overwhelming, and visual art lets me communicate both in verbal and nonverbal periods. 

“Progress,” Pen and Ink Drawing, White gel pen, Artgraf ocher, graphite, and white washes, Micron colored pens, on Stonehenge Archival Kraft Paper, 11x14 inches, 2020. [image description: Construction equipment in yellow & brown in foreground, alongside fence. Telephone wires above, and storefront visible in background.]

In addition being alexithymic; alexithymia is a word that means no words for emotions. I have emotions but not the language for them always, especially the more subtle or in between emotions. Or I have delayed emotional processing. Realizing days or even months or years later how I felt and was affected by something. But my visual art in particular is my primary emotional language. It’s also the one place where I am an optimist.

I'm drawn to your use of line--even the straight lines feel animate! I'm thinking of "Alameda Theater at Night," "Urban Twilight," and "Ducks Bathing in San Pedro Creek" especially. Can you talk about this technique and why it's important to your work?

I’ve always loved drawing and ink drawing especially. I feel like it is thought in action. It is to me as honest as you can get in art. You can’t cover it up, you can only move forward. It can be quick, simple, economical or as detailed, precise, or expressive as one wishes. I feel like it’s an underrated medium, and requires patience. It’s like a form of meditation. And I think it’s versatile, whether using pen and the feedback from how it feels, to every breath potentially affecting the movement of a brush. I also love to create texture in a linear way. Though I may have sensory averse experiences with some mediums. I love texture. Line is a way of adapting to those sensory needs and creating that textural input. It’s also part of executive functioning differences. Seeing the whole from the part. Building the whole from these micro details as part of my nonlinear approach and thinking. Line is a living thing to me.

I'm also drawn to your use of light and color in pieces such as "Base Camp," "Pinball #1 Outer Limits," and "Night Ride, Hays Street Bridge." They remind me of Van Gogh--the inanimate becomes animate. Your website says you seek a "sensory, immersive experience." Can you talk about this a little bit more?

“Base Camp,” Digital Drawing, iPad Pro, Apple Pencil, Procreate, 2019. [image description: Psychedelic-style image of a flower-like structure (central round surrounded by six other round “petals”) appears as if, perhaps, below water among other aquatic fauna and flora. Red, yellow, blue and green hues are dominant against a black background.]

I never tried to emulate Van Gogh outside of one assignment in school; but I’ve always had this naturally post-impressionistic/expressionist style with color and most mediums. 

A sensory, immersive experience is about literally showing my experience with light, sound, color, synesthesia. I had a teacher say once about my work that it was like reality wasn’t enough for me.

He was close; I’m very much a realist in my thinking. It’s that my reality is this heightened experience, which includes all the wonder and terror and everything else. I’ve had some autistic people say my work gives them sensory overload or it’s too intense. Other autistics appreciate it very much. I say to those who find it too intense it’s because you are also experiencing this. This is what I experience daily.

I read somewhere that when some neurotypicals take drugs that the kinds of experiences they have are quite autistic. People frequently ask me if I am using psychedelics when they see my art. I’m not. I don’t have to. I’m this way naturally. This is one reason why I fell in love with digital art when I first used it in my arts high school. The intensity of the light and color; drawing with light was closer to how I saw the world than even my favorite traditional mediums were. I envisioned something like the iPad then but didn’t know how to make one. As soon as it was available I got one and can bring those elements to life. I do still use some traditional media because some more physical haptic feedback is important from a perspective of interoception and other sensory needs sometimes.

How do you feel your disabled artistic practice differs from the practice of nondisabled artists?

I think the primary way it differs is the physical and financial considerations and limitations that I have to balance. And that of course, I want to support myself from my art like most artists; for me that means not simply dreaming big metaphorically but it’s all or nothing for me. Being disabled it either has to work or it doesn’t. I don’t get a choice to not go all in.

How can parents, families and allies best support the ambitions of disabled artists, and, especially, children and teens with such ambitions?

Angela Weddle poses in an art gallery with her work. [image description: The artist wears a red v-neck sweater over a navy shirt and grey pants. Her work appears as a long black and white strip above her head. She stands against a white wall with flower images on either side of her.]

I’m fortunate that my mother always supported me as an artist. With my mother and I both being BIPOC and neurodiverse and disabled, I was fortunate to have a parent that supported me from birth. And even with poverty and to this day struggles with income, that she invested in and exposed me to the arts in whatever ways she could.

I think anyone wanting to support the ambitions of disabled artists can do so by buying their work for one. I’m fortunate that my mother actually has purchased some of my works and respects what I do as work. By respecting us as competent artists and not a novelty. I’ve always disliked the term outsider art and the trend of profiting off of artists when basic needs aren’t being met, or being paraded around like we can’t and don’t have an understanding and deep investment in our ideas and work.

I think many academic institutions are gatekeepers now. So it’s no longer about the pure love of learning. Those institutions decide who gets to be the economic players and they keep out so many disabled and neurodiverse minds under the guise of a well rounded education. This guise is shallow however, when our work can be taught and exhibited in these institutions but our learning processes are not accommodated and the job market uses these institutional gatekeepers to determine worthiness; when these things occur, they effectively decide who gets to participate in society and at which level of those hierarchies. Praise isn’t enough to be functional.

So for me the biggest thing is advocacy because everything is connected. Advocating for a better disability system and social safety net. Advocating for public transportation as a human right. Something as simple as not having control over transportation and being able to go where you want whenever, being able to transport art or travel, for instance, really affects autonomy. Advocating for correct understandings of disability, including policy that is not only informed by but created by actually disabled people. Advocating for housing that is more than warehousing or more than policies that assume the most inhumane solutions, going beyond patronizing benevolence. 

I greatly think most people over complicate things. I’m an artist because it’s what every fiber in me is wired to be, despite my brain supposedly being unable to. Because I’m good at it and because I enjoy it. I really detest artist statements and the intellectual rationalizations that the art world feels it must have for an instinctual human activity. I draw because I love it, I can, and I have to. I did so as a child and do so now. I, of course, was aware of the challenges of making a living with it. But when one is disabled one does not always fit into neurotypical jobs. There isn’t always something to fall back on. Especially with multiple disabilities. So as a child if I would have known that being disabled would have affected my art by making it a do or die proposition; that there wouldn’t just be the normal anxieties with being self employed but an urgency because this is it….if you want to advocate for your children think of the kind of life you want them to have as an adult. Because my life is always difficult. Having these systemic changes could give me an autonomy that would affect my art and everything else in ways I can’t imagine; to be able to breathe is what it would feel like. 

If you had just one sentence to explain why art matters as a form of advocacy, what would you say?

Art speaks and reaches in ways that other formats can’t, and shows us the value of all of our humanity.

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer. If you have an idea for our blog, or would like to be featured in it, email her.

Members of Little Lobbyists pose with Senator Chuck Schumer on the Capitol Building grounds. [image description: A large group of adults and children, many using alternative mobility, pose in front of bright green summer tree foliage.]

With vaccines on the horizon for teens and younger children this summer and fall, the end of the pandemic may be close enough to grasp. How will you seize the moment as an advocate? These last weeks, I’ve been reflecting on my own plunge into state and federal advocacy, which began in late 2018, the result of my son Rob’s transition from high school to adult life. Rob wanted to be a writer, an artist, and an advocate. He’d participated in a rally against the white supremacist violence in Charlottesville, Virginia, and, apparently, that inspired him to want to do more.

His transition team thought those were fine goals, but none of the adult service providers in our area had programs that did all of those things, nor could they accept Rob due to his complex medical needs. So it was up to me to support Rob’s choices. I was a writer; I knew artists--ok, two down. But advocacy? Certainly, I’d advocated for Rob’s needs for almost 20 years, but I’d never taken that advocacy beyond the personal. But the personal is the political, right?

Rob Stone at a Bethesda protest against the violence in Charlottesville, Virginia. [image description: A young white man wearing sunglasses is seated in a wheelchair. He holds a multicolored, hand-painted sign, “HONK! 4 LOVE".]

So I reached out to Little Lobbyists, among other groups, trying to find a place that would help make Rob’s voice (and mine) heard. It was Little Lobbyists parents who taught us how to tell our stories--storytelling is the beating heart of activism, a means of bringing passion to the sometimes cold rationales of the policy table. I discovered that Rob’s voice, my voice, and YOUR voices matter.

In my feature for this blog, Share the Journey with Jeneva, I ask people to define advocacy in a single sentence. I ask because I want to get to the heart of what advocacy is and can be, beyond any one particular issue. I want all of you to understand that anyone can be an advocate--you show up, you tell your story. 

How would I define advocacy in a single sentence? Advocacy is a willingness to go outside your comfort zone, stand up or roll up, and be heard.

What does it mean to you? Here’s how the people I’ve interviewed have defined advocacy:

Laura Robeson: Advocacy is using your story and experience to impact change.

Liz Randolph: Advocacy opens the door to a better world in which we all listen to and learn from each other. 

Ken Capone: Advocacy is the empowerment of people to obtain the knowledge to achieve their goals and dreams in life.

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

Alice Wong: Advocacy is telling your truth and caring for others. 

Meeka Caldwell: Showing up with your presence, voice, and knowledge for the ones that need it the most. 

Amy Silverman: Living your truth out loud for all to see. 

Sophie Stern: Advocacy means when you stick up for someone. 

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

Nathan Spoon: Art matters as a form of advocacy because it shares the cultural life of disabled people. 

Ande Kolp: Speaking for yourself (or assisting someone to tell their story)--it is helping people to see what you see, what you believe is needed in the community, and collaborating to accomplish something that will benefit us all--like inclusion, human rights, and in the case of the HAA, community for ALL.

Maya Brown-Zimmerman: Advocacy is using your lived experiences to affect change, whether it’s change on a small level (for your life, or your child’s life), or for a broader community.

So let’s get back out there, as vaccines and our schedules permit, and tell our truths about health care, Medicaid, Home and Community-Based Services, disability rights, and much more!

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Jeneva Stone is the blog manager for Little Lobbyists. Share your story with us on our blog: email Jeneva!

Rob Stone and his dad advocating with Little Lobbyists [image description: A young white man with short, curly dark hair, poses in his wheelchair, his supportive vest covered in political buttons. His head rest supports a sign that says, “Little Lobbyists: Please Save Our Health Care.” An older white man stands just behind him. Both wear royal blue t-shirts.]

As parents of children and young adults with disabilities, we should always work to be better allies. Being an ally means empowering our kids and asking ourselves some challenging questions: Are we letting our children speak for themselves? Are we giving them the means and the platform to become their own advocates? As we advocate, are we centering our own experience as caregivers, or their experience as disabled people? 

As a writer, I know that how we use our words matters. We, ourselves, may have heard certain terms used in a medical setting that we think are ok to use, or heard slurs directed at our kids that we know not to use. But have we listened enough to people with disabilities themselves and how they would like us to use language? Soon enough, our own children will be grown. Listening to the disability community and using appropriate language helps us raise them with a sense of dignity and awareness, with the understanding that they are allowed and encouraged to challenge the words used to describe them, and that their lives are their own.

So let’s talk about a few terms in use by nondisabled people that are not preferred! These terms can be infantilizing, misleading, or derogatory. The best way to unlearn them is to understand why they are harmful and what we can say instead.

Special Needs: We should say our children have needs, just like anyone else! They need to eat, dress, go to school, breathe, and thrive. They might access these activities with medical interventions or social accommodations, but their needs are still the same. Disabled people feel that referring to their needs as “special” perpetuates the idea that disabled people are not like their peers when inclusion is really a matter of access and accommodation for everyone, disabled and nondisabled.

Wheelchair-bound: This phrase suggests that the person using the wheelchair is stuck or imprisoned in their chair, when, in fact, many wheelchair users see their chair as their freedom and means of accessing their world. This phrasing also suggests that the wheelchair user cannot make their own choices, or spends all their time in one seated position. Wheelchair users have dignity. They decide where they want to go (and when), and when they want to use other physical supports (bean bag chairs, beds, walkers, other chairs). A wheelchair is a means of being independent. 

[Insert disability or medical condition] Mom/Dad/Parent: As parents, we provide a lot of support to our children, but that doesn’t mean we share their disabilities. When a family caregiver uses this label, they are centering their own experience as caregivers, instead of our child’s experience as a disabled person. We need to let our children have their own identities, and we, as family caregivers, need to develop identities of our own. Try saying, “I’m the parent of an autistic child,” instead. 

Nonverbal: Many disabled people rely on gestures, sounds, and facial expressions, and/or assistive technology, such as tablets, symbol and letter boards, or other computerized devices in order to communicate. This does not mean they don't understand language; they simply may not use their mouths and vocal chords to generate words, i.e., “speak.” Try saying that someone is nonspeaking instead. 

Medically Fragile: By referring to our children using this phrase, we’re perpetuating an image that they are less capable than they really are. Referring to someone as “fragile” gives others the impression they need to be sheltered and kept apart from their communities. Disabled people with all sorts of medical needs (tracheostomies, ventilators, tube-feeding) are present in their communities every day! By referring to your child as medically complex, you’re not shying away from their high medical needs, but you’re emphasizing their capability. 

High/Low Functioning: Drawing distinctions among people based on assumptions about their capabilities, whether cognitive or physical, isn’t the way nondisabled people would refer to other nondisabled people. So why use these terms with disabled people? Your friends are good at some things, not so great at others. Instead, describe the supports your child might need to participate, such as, “My child needs instructions in plain language,” or “My child can play baseball, but must hit the ball from a tee, and needs help swinging the bat.”

SpEd Kids/Special Education: As with “special needs,” we must emphasize that our children’s need for an education isn’t “special”; it’s as universal a need as anything else. While school systems refer to “special education” for the time being, as parents we can avoid using that phrase in our conversations with friends and family, as well as the phrase, “SpEd kids.” Try just saying, “My child attends elementary school.” If you need to explain anything else, try saying, “My child receives learning accommodations, just as “gifted” children and other groups do.” 

Crazy/Insane/Nuts: Mental health should never be treated lightly, nor turned into a joke. But the use of words like “crazy” or “insane” to describe feelings, events, or actions is everywhere. It can be challenging to stop using these words, but we all need to try. Instead, you could substitute “wild,” “amazing,” for stuff we enjoy, or “uncalled for,” “inappropriate” for actions or encounters we can’t understand or condone, or “unsettled,” “scattered,” “that annoys me,” for feelings. 

Dumb/Idiot/Moron: These words were used along with “mental retardation” in medical diagnostic manuals during the 19th and 20th centuries to define levels of cognitive ability. They’ve since migrated into casual conversation, but it isn’t right to judge anyone’s intelligence, even if you think you’re just kidding. Try substituting “insensitive” or “mean” or be more descriptive and say, “My boss is a really bad boss.” Or just don’t use them at all. 

R-word (some people STILL don’t know): Just don’t use this slur. It conjures up everything ugly about you. People use “r*tard” because they think it’s the only acceptable slur left after racial and ethnic slurs have become unconscionable to use. It’s not a joke, either, nor a term of “endearment.” 

The R-word is an unconscionable word because it implies that disabled people are completely other and different from everyone else. And that’s really the issue, disabled people are not different, they’re just like everyone else. Their needs, to be listened to and respected, are also the same as everyone else’s. As parents and caregivers, fulfilling that need starts with us.

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Jeneva Stone is the Little Lobbyists blog manager. Have an idea for a blog post? Email Jeneva!

Sierra as a child during a hospitalization. [image description: A young white girl with short black curly hair stands holding onto an IV pole mounted with various medical devices. She wears a black pajama shirt and pink patterned pajama bottoms.]

“Fortunately, your daughter will still be eligible for a kidney transplant even though she has developmental disabilities,” the doctor said.

I sat there stunned. It had never occurred to me that my daughter’s intellectual disabilities could be a reason to deny her the lifesaving kidney transplant she needed.

Sierra was nicknamed “The Mayor” at her middle school because my tiny daughter has a big personality and always knows what should be happening and who should be where, and is not shy about sharing that information. She confounds doctors who review her medical records and labs and, based on that, expect to see a very sick girl when they walk into the room and instead find this energetic person who is living large and loving life. 

My spunky, loving, sweet daughter Sierra was born with a rare genetic condition called cystinosis which causes progressive damage to organs and tissue throughout her body. Only 500 people in the United States have cystinosis. After presenting with failure to thrive as an infant and seeing numerous specialists and undergoing every diagnostic test you can imagine, she was diagnosed with cystinosis, developmental disabilities, and verbal apraxia which means she has difficulty forming words. Cystinosis eventually leads to kidney failure, and Sierra’s kidneys began to fail when she was about four years old. 

People diagnosed with cystinosis did not usually survive beyond age 10 before kidney transplants became possible. Kidney transplants were a game changer for the cystinosis community, meaning children had a future. Not just a future, but a bright future in which they could have a good quality of life and live a more typical life span. 

As our family struggled to digest and adapt to the reality of our beloved Sierra having this chronic disease, we were mortified, terrified, sickened, and angry at the thought that her intellectual disabilities would ever be used as a reason to deny her any type of medical care, especially a lifesaving organ transplant. 

Sierra today. [image description: A young white woman with long curly blonde hair is seated outdoors. She wears a scoop-neck burgundy top and a burgundy and black checked skirt.]

Sierra, who is now 25 years old, loves to sing and dance, attend concerts, take care of people, volunteer in the community, and gives the best hugs, has survived cystinosis, a kidney transplant at age 6, lymphoma at age 10, a second round of kidney failure caused by the cancer treatment, a year of dialysis, heart failure, a second kidney transplant at age 12, and most recently, a stroke. Yet she comes through it all and continues to carry a spark that ignites joy in everyone she meets. Sierra is love on legs. 

Our family got lucky in that we have been working with an institution that did not include developmental and intellectual disabilities as part of their criteria to determine who would and would not be eligible for organ donation. 

But it shouldn’t be about luck. Sierra’s worth should not be measured by her IQ. She is invaluable.

We need to make sure all the Sierras out there are protected and able to get the organ transplants they need to preserve their valuable and precious lives. U.S. Representatives Jaime Herrera Beutler (D-WA) and Katie Porter (D-CA) have recently reintroduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R.1235), “which will prohibit using an individual’s mental or physical disability as the sole basis of determining their eligibility for an organ transplant.” 

While 13 U.S. states have passed legislation forbidding discrimination in organ transplant surgery on the basis of disability, bias persist. H.R. 1235 would ensure that disabled people in the remaining 37 states can have their health needs met without fear. In December 2020, the American Academy of Pediatrics issued a policy statement warning physicians and hospitals that denying transplants to people with disabilities could be both discriminatory and illegal.

You can help protect people with disabilities like Sierra by emailing or phoning your U.S. House and Senate representatives directly to support H.R. 1235. You may also call the U.S. Capitol Switchboard at (202) 224-3121 and ask to be connected to a particular office. 

If you or someone you love has encountered discrimination in obtaining an organ transplant because of a disability, please share your story with Little Lobbyists! 

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Julie Ayers is is the Service-Learning Specialist for the Maryland State Department of Education where she oversees Maryland’s ground breaking service-learning graduation requirement. She’s taught at the Florida Institute of Technology and been an adjunct instructor at Loyola College of Maryland. She has also worked in the Maryland non-profit poverty solutions sector and was responsible for developing the Kids Helping Kids anti-hunger curriculum. Julie has created many publications supporting, and several articles on, Maryland’s service-learning program. But most importantly, she is mother to two wonderful humans, Sierra and Sawyer.

Abby had a history of seizures, but this one was very different. 

The snow had been falling steadily outside the window as another winter storm moved in over our rural town in western Pennsylvania. My husband, a pilot, was away on a business trip, and I was just getting my preschooler ready for bed after a long warm bath. It felt like a perfectly cozy winter night. I laid her down on her bed, wrapped in a soft bath blanket, while I picked out some pink pajamas with little polar bears on them. As I looked back at her I saw it. Her body was stiffening and shaking while her eyes were vacant. It only lasted about 30 seconds, but it felt like an eternity. 

After that night, Abby’s team started documenting more and more seizures. Her neurologist believed she was having upwards of 30 seizures a day that we just weren’t able to see. Her team started to warn of seizure progression. So we hopped on the merry-go-round of medication trials. One after the other. Carefully weaning onto and then off of each one. One made her sleep all day, and the next showed no seizure control at all. A third made the seizures worse, and so on. 

Abby lived her life in the fog of the nearly continuous seizures, combined with the medication-induced fog of whichever drug we were trying now. We finally settled on one, but we had to continually increase the dose and Abby lost weight and seemed regularly more tired, as the medication stole her appetite and energy. 

Photograph of Abby, a 6 year old girl wearing an Elsa nightgown, glasses and bandages around her head wrapping up EEG wires while sitting in a chair next to a hospital bed holding Mickey Mouse and Minnie Mouse dolls.

As Abby’s seizures progressed, we decided to add CBD, and, later, THC, the two main components of cannabis. The effect was dramatic. The seizures all but disappeared. A year and a half after adding THC, her team at a world-renowned medical center decided to try taking her off of her pharmaceutical medication. In order to do this safely, she had to be admitted as the medicine slowly worked its way out of her system. They kept her hooked up to IVs and a continuous EEG for the entire admission--just in case, they told me. They wanted to be able to intervene quickly. They slowly titrated down and eventually stopped her medication. Then we watched and waited. 

Stopping a pharmaceutical epilepsy medication can be very similar to weaning someone off of heroin or other opioids. These medications are powerfully addictive, and the risks of stopping them suddenly include triggering massive seizures or even death. Cannabis is not physically addictive. You can safely stop taking it without any adverse reactions. Once Abby’s team felt satisfied that it was safe to discharge her, they sent her home with instructions for only one medication--the one that they said was the safest and most effective for her--medical cannabis. 

With the pharmaceutical drug out of her system, she became more alert, got her appetite back, and friends and teachers immediately started commenting on how different she was-- more engaged, more alert, happier, and more energetic. After spending half of her life on a medication that was sapping her of energy, we were suddenly treated to the full feistiness of our spunky little one, and it was amazing.

We cannot cross state lines with Abby’s cannabis while it is federally illegal. When we started her on THC, it was with a letter from the state of Pennsylvania guaranteeing safe harbor inside state lines, but nowhere else. Many families, including ours, use cannabis not just as a regular daily medication, but often a rescue dose during a seizure. Leaving it at home is not always an option.

Traveling with medical cannabis presents a host of legal challenges--especially if you happen to cross state lines. Documentation requirements vary from state to state and can be a major barrier to care for many families due to the fees, required background checks, and even banking rules involved. These requirements exist because medical cannabis is still illegal at the federal level. The irony is that all that documentation isn’t required for far more potent medications. Without medical cannabis being legalized at the federal level, there is simply too much legal grey area for families--especially those who are already marginalized and at risk during a traffic stop as we have seen too often. 

Families often have to balance the benefit of a potentially life-saving medication with the risk of losing custody of their medically complex child, and, in some cases, even going to jail.  

No family should have to choose between their child’s health and unjust legal consequences. It is time for our legislators to legalize medical cannabis at the federal level so that our children can have full access to the medication they need to not only survive, but thrive. 

Erin Gabriel is the National Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania. This story was shared with Abby’s permission.

Photograph of Abby, a little girl with brown hair and glasses, now age 11, wearing a pink life vest, seated in the front of a boat on a river, with her hands up in the air and laughing excitedly as though on a roller coaster ride.

Maya’s daughter Ruby. [image description: A young Black girl with long, curly black hair wears pink sunglasses while she makes notes with a pen on a blue pad.]

Maya Brown-Zimmerman is an adult with a rare genetic disorder, parenting four kids with medical needs themselves. When she’s not handling school stuff, driving people to doctor and therapy appointments, taking classes herself (working towards a goal of a Masters in Genetic Counseling), and doing advocacy work within the aortic connective tissue disorders community, she loves HGTV and a good book.

Tell me about your family.

I’m married to my college sweetheart, Mark. We have four children: two boys and two girls. In our household we have the diagnoses of Marfan syndrome, autism, brain injury, and ADHD, among others. Prior to Covid we loved traveling and spending time with extended family. These days we’re exploring new games on the Switch, and spending as much time in our yard as we can.

Tell me about your child’s complex medical needs & disabilities. 

As I said I have four kids. In regards to this particular topic, my daughter is in kindergarten this year. She loves everything Disney, Descendants, Barbies, and playing outside. She keeps us all laughing with her facial expressions! She also has a brain injury from in utero. The disability has manifested itself in a variety of ways, including social communication delays, lack of impulse control, aggression, slower processing, and some executive function difficulties. She’s autistic as well.

Many families may not know they have a right to an Independent Educational Evaluation (IEE) for their child with disabilities. Can you explain what an IEE is and why it’s valuable?

Think of an IEE as a second opinion. If your child is on an IEP (Individualized Education Plan), you’re familiar with an ETR: Evaluation Team Report (in some districts it’s known as an MFE: Multi-Factored Evaluation). This is when the school evaluates your child in a variety of areas. It’s used to determine the need for an IEP initially, and then it must be done every 3 years (the triennial review). It can also be done more often, if needed. The whole IEP team--so including you, the parent--decide what areas to evaluate during the ETR/MFE. When preparing for my child’s ETR this time around, I specifically requested we examine pragmatic speech, for example, even though the speech therapist didn’t think it necessary. 

You can learn more about requesting an IEE at blogs like Wrightslaw, for example.

Why did you seek an IEE for your child? What were the circumstances?

We requested an IEE for my child for two reasons: 1) The ETR results were not what I was expecting to see, and 2) The ETR results would mean a major change to services. Before agreeing to such a change, I wanted a second opinion. If your child’s doctor were suggesting a surgery you weren’t expecting, or wanted to make a drastic medication change, you’d probably get a second opinion, right? School decisions are just as important. 

Do your homework and read more about the process and the pitfalls. You can find examples of special education letters for various purposes on the Disability Rights Education & Defense Fund here, which may help you draft your own.

The Brown-Zimmerman Family. [image description: A family of two adults and four children poses on a green lawn with trees in the background that are just beginning to leaf out. The girls wear matching light blue sailor dresses, and the boys wear athletic jackets. Maya wears a navy blue dress with narrow white stripes. Her husband wears a green shirt with a collar.]

How have you engaged your children in self-advocacy?

At a young age, I believe self-advocacy starts with having control over your body: being able to say no (“don’t touch me,” “I don’t want to do that,” etc.). We started explaining our kids’ medications to them around age 2-3: “This is your brain medicine, to help your brain be calm”; “This is your heart medicine, to help keep your heart strong”; “This is your poop medicine, to help you poop.” Obviously those explanations get more detailed as developmentally appropriate. 

We encourage them to ask questions at doctors’ appointments, and prep them for what to expect ahead of time. One of my kids had their first appointment at a pain clinic today, so last night I explained what kind of questions the doctor would ask, and I typed up answers in my child’s words to those questions, so that they wouldn’t feel put on the spot at the appointment.

At school, I ask my kids what is hard for them, and what they think would help. They don’t attend IEP or 504 meetings yet, but the older kids give input, and I tell them what I’m thinking about requesting and get their feedback on that. One of my kids also likes to give a class presentation about his rare disorder. He started doing that with me in first grade, but within a couple years moved to doing it entirely on his own. 

Self-advocacy is also about teaching my kids that no one is entitled to information about them (except their doctors, who need to know in order to best help them). If someone is asking why they wear headphones, or use a wheelchair, etc., my kids know they can answer the question truthfully, make up something ridiculous, decline to answer, or have me decline on their behalf.

How has advocacy given meaning to your life?

I started advocacy work at 13, following the death of a friend from our shared diagnosis. For myself, being able to advocate leads to better health outcomes. On a larger scale, I feel that I’m able to make an impact in my rare disorder community, whether that’s helping teach others how to self-advocate, or working with doctors to direct research, or lobbying for universal health coverage. I want a better world for my kids, one that will be easier for them to navigate because supports will exist, instead of having to be fought for.

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

Advocacy is using your lived experiences to affect change, whether it’s change on a small level (for your life, or your child’s life), or for a broader 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 Share 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. 

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

Ande Kolp (third from left) and her children. [image description: A white-appearing family poses in the living room of their home. Five people stand in a line, arms linked. They wear brightly colored t-shirts: 3 women at center, 2 men on either end.]

Ande Kolp is the Executive Director of The Arc Maryland. Over three decades, Ande has supported people with intellectual and developmental disabilities and their families in various positions within Maryland and Iowa. She holds a Bachelor’s Degree in Music Therapy from the University of Iowa and a Master’s Degree in Special Education with a Concentration in Severe Disabilities from The Johns Hopkins University.

Jeneva Stone is the Little Lobbyists blog manager.

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JS: How did you become an advocate? What do you consider your first act of advocacy?

AK: I’m not quite sure but I think I have always been tuned into equity and inclusion and I believe that drives what I do and how I behave!  Growing up in Iowa, I was fortunate to attend a school that was highly inclusive. I’m fairly sure that was not typical back in the 70s, but I had friends on the spectrum of ability (and disability) and so I had the opportunity to see and live how our differences enrich us. 

As I entered the workforce, I first worked as a Direct Support Professional and held that role for a number of years before moving to Maryland where I did a music therapy internship at Crownsville Hospital Center. That experience changed me. I was deeply saddened and also angered at seeing people locked away in large brick buildings that were referred to as “cottages.”  The conditions … Ah ... I can’t describe it in such a way that would respect the experience of the people who had to live there. I think I found my calling then and there that I wanted to use my time on earth to support the voices of people in their demands to live their best, free lives, with quality community-based supports as needed to do so. 

Ande Kolp [image description: A black & white photo of a white-appearing woman with shoulder-length hair, wearing hoop earrings, a light-colored sweater & a dark v-neck top. She poses seated at a piano with framed photos of artwork above the piano.]

What do you find most satisfying about your current role with The Arc Maryland? 

Prior to coming to The Arc Maryland, I had worked for local chapters of The Arc in Maryland and so I already knew I held the same values and believed in the mission of the organization. The state chapter is different than the local chapters in that we focus more broadly on the needs of all families and all people with Intellectual and Developmental Disabilities (IDD) throughout the state, whether they receive direct services from our local chapters or not. We also support children and get involved with early intervention and education advocacy matters. Most satisfying is probably seeing the outcomes of our grassroots advocacy and being a part of that systems change. 

We have a partnership with the Maryland State Department of Education, Maryland Department of Disabilities, and the Maryland Developmental Disability Council on an inclusive schools and disability awareness initiative called “Together We’re Better.” It is really fulfilling to see how the program has grown in engagement with schools and students, and especially seeing/hearing the reactions of the students during assemblies; when self-advocates talk about their school experiences and the students go out of their way to thank the advocates for raising their awareness.  

The legislative session is highly satisfying too because I have the opportunity to meet and interact with so many advocates and partners as we work through the legislative process and together try to move the dial on disability rights and needed resources.

The Arc of the United States has been integral to the development of the Home and Community-Based Services Access Act (HAA), recently released by the U.S. Congress as draft legislation. Could you give us an overview of the HAA and the effort that’s gone into it?

Sure! This is a discussion draft of a bill that will make Home and Community Based Services (HCBS) mandatory, eliminate waiting lists, and do more to create parity across states around access to HCBS. This bill builds on 70 years of The Arc’s history and efforts to help people with disabilities and older adults access the HCBS they need in order to live in the community with friends and family. The Arc of the United States staff have worked hard with legislators’ offices for over a year, and they are also working on materials to support the campaign that will surround this bill. We are only at the beginning of this effort.

For some background: People with intellectual and developmental disabilities often need some degree of home and community based services (HCBS) which provides them with assistance to eat, to dress, for personal hygiene, and for managing health care or finances. For people with limited incomes, these services can only be obtained through Medicaid.  Unfortunately, in Maryland and many other states, the Medicaid HCBS programs currently have long waiting lists. 

There are an estimated 850,000 people on HCBS waiting lists across the country. Currently, the HCBS services and the waiting lists in each state are not “portable.” This means that people with disabilities who are in services OR on the waiting list in one state cannot move to another state without risking the loss of their services or going to the bottom of the new state’s waiting list. This lack of portability traps people in the states where they live.

Medicaid is technically an institutional insurance. It is used for nursing homes and other long-term care services. The Medicaid waiver services in Maryland (meaning that the requirement that these services must be provided in an institutional setting has been “waived”) support people to receive these services in the community (HCBS). While the institutionally-based services are provided as needed--there are no waiting lists--there ARE waiting lists for the HCBS services! That is because in Medicaid, HCBS services are considered “optional.” This is what we term the “institutional bias” of Medicaid that The Arc and others have advocated for seven decades to change. 

This institutional bias persists even though it is shown in study after study that HCBS services are more cost effective and promote the best quality of life.   

To change our national Medicaid system nationally would require a significant investment.  Federal funding will be needed to support states to build their capacities to eliminate the HCBS waiting lists and to serve everyone in need.

 For the HCBS Access Act (HAA) to be successful, and as part of the capacity building that needs to happen, we are going to need a sufficient workforce to support all of the people who come off the waiting lists. There needs to be ample consideration and effort put into saving the HCBS workforce (Direct Support Professionals also known as DSPs), which is in crisis due to insufficient funding and insufficient recognition. The HAA would address this crisis by increasing pay rates for DSPs, providing training/career path guidance, and recognizing DSPs as the career professionals they are through the Bureau of Labor Statistics. 

In all, the changes this bill would create would finally allow people with disabilities the freedom to move from state-to-state without fear of losing crucial HCBS services. 

What does “draft legislation” mean? When might a bill be introduced in the House or Senate? What can all of us do to help speed the HAA on its way to becoming law?

“Draft legislation” means this is an idea that members of Congress have developed after a long time of taking stakeholder feedback, but that idea is not quite ready for prime time. The sponsors of this “discussion draft” need feedback from constituents and other stakeholders to fine-tune the proposal and ramp-up the tremendous national support that will be needed to get this bill through Congress. Senators Maggie Hassan (D-NH), Sherrod Brown (D-OH) and Bob Casey (D-PA), and Representative Debbie Dingell (D-MI) developed and released this draft, and now it is up to the community of people for whom this is important to advocate and work with the offices for full introduction, hopefully this summer. 

Each of us can help by reaching out to our representatives in Congress. If each of the 93,000 people in Maryland who have IDD (or a family member) committed to contacting just one representative with a personal story about how community services have or will (in the future) impact their lives, that alone would go a LONG way!

How has advocacy given meaning to your life?

For me, the mission gets me out of bed in the morning. I get excited about it and love to see the changes I and we have been a part of effecting. I am so appreciative of all of the lovely people I have met and now know through my work. I guess I just consider myself incredibly lucky that I get to do what I love to do.

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

Speaking for yourself (or assisting someone to tell their story)--it is helping people to see what you see, what you believe is needed in the community, and collaborating to accomplish something that will benefit us all--like inclusion, human rights, and in the case of the HAA, community for ALL.

Amadou, Zana, and Amy. [image description: A Black family poses on a couch. The dad wears a black & white plaid shirt, the son wears a colorful striped shirt, and the mom wears a gray shirt, her hair pulled back into a bun.]

We must end police violence against Black Americans, and against all people of color, and people with disabilities. The U.S. House of Representatives recently passed the George Floyd Justice in Policing Bill of 2021, which, if enacted, would ban chokeholds and end qualified immunity for police officers. Police violence affects communities of color disproportionately. Data from Mapping Police Violence shows that about a third of those who died in police custody were Black. 

Police violence also has a disproportionate effect on the disabled community--estimates suggest that between 25 and 50 percent of those killed in police custody had a disability. Autistic children and adults are especially vulnerable to police violence due to the common behavior of elopement, which is wandering off to escape anxiety, overwhelming sensory stimuli, or to simply seek out enjoyment such as interesting places or the sensation of running. 

Little Lobbyists Zana’s mom, Amy Koné, explains why she and her husband Amadou fear for their son, a Black Autistic five-year-old. (Zana calls his daddy “DaHee”):

Hiya village.

This one is deep. Like you might need a tissue deep.

 Amadou works outside for a living. He is in a lot of neighborhoods and sees a lot of things.

Today he was in the right place, at the right time.

A little four-year-old boy escaped his house and was running down the street. Amadou pursued him and was able to return him safely home.

So Zana’s DaHee is a superhero!

DaHee would not agree. He would say “I was just taking care of a little kid” and that when he saw this little boy he saw our Zana. 

I am sharing this story because as a parent to a child with Autism, Amadou knew elopement when he saw it. (It is different from a child who is a runaway.)

I also am sharing this story to try to bring some awareness to our society. 

First, If Zana were to ever elope I would NEVER call the police. I am a Black woman, married to a Black man, looking for a little Black boy. We are all three targets. 

I’ll let that sink in.

Our being Black is not surprising to anyone, but I mention it because I need people to appreciate how persistent tensions between the blue people and citizens impact us. I’m sure not all of the blue people are shady but I simply cannot take a chance.

Second, the poor mother was in a state of denial/shame. Amadou shared our story with her and now she knows she is not alone.

The stigma of having a child on the spectrum is sometimes so heavy that parents prefer to not address the condition at all.

Folks, the pressure is at times immense.

I cry myself to sleep many a night despite my acceptance of Zana’s diagnosis from the very beginning (his diagnosis was a relief to me because I could FEEL that something was different).

I can only imagine the storm brewing in a Black parent in denial AND facing the responsibilities of caring for a child on the spectrum.

There are many bright spots of being a parent to a child with Autism. One of them is that our little Zana is a sensory seeker. Extreme behavior makes him ecstatic; he feels ALIVE when he is living on the edge.

Since DaHee loves sports, the two of them have an extra deep bond. Zana loves to be thrown all around.

Folks, let me remind you that hubs is 6’5” and frequently mistaken for a pro football player. Imagine a man this big flinging your 55 lb. “baby” through the air, only to have him land safely on a mattress.

And both are filled with glee. 

I’m thankful Zana has his DaHee.

And that Zana’s DaHee can dig deep (all athletes understand this) when he is absolutely spent from a day of working outside in unpredictable weather to rough house with Zana.

Thanks, as always, for listening and caring about us. This village is phenomenal.

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Amy Koné is parent to a child with Autism and a member of Little Lobbyists. She currently resides in her hometown, Baltimore MD, with her husband and son. Their family now spans three continents, five countries, and an ever growing circle of friends.

Nathan Spoon. Photo credit Allison Steinquest. [image description: A white-appearing man poses in profile. He has short, wavy dark hair, which is greying at the temples. He wears a white collared shirt and a navy blue vest jacket. The background is a white and reddish brick wall.]

Nathan Spoon is an autistic poet with learning disabilities whose poems and essays appear or are forthcoming in American Poetry Review, Columbia Journal, The Cortland Review, Gulf Coast, Harvard Divinity Bulletin, Poetry, and the anthologies How to Love the World: Poems of Gratitude and Hope, and Sonnets from the American: An Anthology of Poems and Essays. His chapbook, My Name Is Gretchen Merryweather, and a debut poetry collection, Doomsday Bunker, were published in 2017. He is editor of Queerly.

Jeneva Stone is Little Lobbyists’ blog manager. She met Nathan last year and has become a fan of his work, which she loves for its complex, unexpected imagery and metaphor, its sound qualities, and its deep emotional timbre. Two of her favorites are “Poem of Thankfulness” and “The Republic of Tenderness.” Jeneva has also been impressed by Nathan’s advocacy on behalf of autism and people with disabilities. 

Jeneva: Tell me about yourself. 

Nathan: I was born in Newport, Rhode Island, and my sisters describe me as the calming, reliable older brother to my two sisters and three brothers. I am autistic with ADHD, dyscalculia (difficulty with understanding math), and dyslexia. I was undiagnosed with these disabilities until age 44, so I had difficulty in school and was lucky to graduate high school. Fortunately, none of the challenges that come with being undiagnosed lessened my curiosity and enthusiasm as an independent learner.

I began to develop an interest in art in 2nd grade. At first, I enjoyed drawing, and then painting. Eventually I was sculpting limestone while independently studying Brancusi. I developed a love for poetry in my late teens. My parents were supportive of these interests and, even with our limited family income, I had my own books (which I kept stacked on my bed, beside my pillow!) and access to art supplies. 

JS: How did your interest in writing poetry develop? Do you remember when you wrote your first poem?

NS: My interest in poetry developed almost accidentally. I was in the attic one day, looking through a box of my dad’s writing supplies, when a notebook caught my attention. It was really a small ring binder with blank pages in it. Because there were three holes down the left side of the pages and because the corners were rounded, I was uninterested in using the pages for drawing. (I liked my drawing paper to be a perfect rectangle.) Still, the notebook called to me, so I brought it downstairs, and when Josh, who I shared a room with, was away, I opened the binder with a pencil in hand. I was not confident to write in proper sentences, much less paragraphs, so I went off the left margin writing a few sentences about how aware I was of my inability when it came to writing and how I still wanted to try. I recall pausing over the completed page and looking at the shape and thinking how it looked like a poem. So, I turned the page and made a more intentional effort.

JS: Describe how you see poetry as part of autistic self-expression.

NS: Poetry allows me to be calm and centered in a world that can be garish, loud, frenetic, and overwhelming. To write a poem I pause and settle into my mind’s eye. The best description I have heard for what I do comes from the Ralph Waldo Emerson essay, Nature, where he writes, “Standing on the bare ground, ―my head bathed by the blithe air and uplifted into infinite space, ―all mean egotism vanishes. I become a transparent eyeball; I am nothing; I see all; the currents of the Universal Being circulate through me; I am part or parcel of God.” From this inner orientation, spaces and shapes and words rush into view and I begin connecting what I see with language appropriate to each poem. I love using visual thinking to collide architectonic sound arrangements, observations of everyday circumstances and of nature, and more abstract or cerebral impressions, images, thoughts, and ideas into a kind of neuroqueer language of the birds.

I also love using language in ways that are independent of social communication dynamics. My poems usually do not have a singular arch of meaning. Essentially, I have difficulty keeping to a single line, which is crucial to most social communication. But if I can ricochet between several different lines, that are disappearing and being replaced by newly emerging lines as the poem unfolds, then I am fine. When it comes to reading, I always say I would rather read James Joyce than James Patterson, and when it comes to poetry, I write poems like many people write correspondence such as email or text. It took me many years to get a handle on writing emails. I can write them now after a business colleague gave a formula I could understand, but I would still rather be writing a poem. It is common for autistic (and dyslexic) people to have difficulty with “simple” things and an easy time with certain “difficult” things.

JS: I'm intrigued by your poem "Kiddo." It is Little Lobbyists policy to avoid ableist language, but "kiddo" has become so ubiquitous, I hadn't thought of its ableist implications. Can you explain how you came to write the poem and why "kiddo" is offensive?

NS: Within the ocean of ableism, “kiddo” is relatively innocuous at first consideration. It is also challenging as it is technically a term of endearment. However, I have noticed a higher percentage of parents of disabled children referring to their children as “kiddos.” It is common enough that you can google “autistic kiddo.” If this term was used as often by parents of non-disabled children, then it would clearly be nothing more than an expression of endearment. The issue, I believe, is that it is being used as a way of saying “this is my cognitively disabled child” without naming the disability, which holds a space for shame instead of an open acknowledgement of how someone can be celebrated as different. I believe that shame and hatred are at the core of ableism. So, to avoid these negatives, it is important to say something like “this is my autistic daughter, Amie,” to actively give voice to pride.

In this poem, I am writing in relation to the above as well as in relation to personal encounters with being called “kiddo” as an openly autistic adult. For example, a non-autistic colleague who calls an autistic colleague “kiddo” at work could leave the autistic feeling awkward. They may have good intentions, but it could come across as infantilizing and embarrass the autistic person, especially if other colleagues overheard this. If it happens, it is important to kindly ask the non-autistic colleague not to use that term.

This poem begins with the image of a consumptive mountain sliding through a field that is the field of the narrator’s hand. Then the narrator mentions things that adequately sustain their hand. After a sentence affirming how to move forward, this sonnet (-like poem) turns, as the narrator shifts into wondering in a critical way about a piece of furniture encountered in a public seating area. Finally, the poem concludes with the narrator being distracted (and saved?) by a pair of bright shoelaces. I am not content to simply point out an issue and I always hope to heal and repair, beginning with myself, through my engagement with writing poems. By calling this poem “Kiddo” the infantilizing and othering aspects are reclaimed by the speaker, and by me, as its autistic author. 

JS: How do you feel your writing practice as an autistic differs from the writing of neurotypicals?

NS: I write poems in a single draft. For me writing a poem is like unrolling a scroll. I begin with a feeling that I have something to say. Then I write the first phrase or sentence. Each next thing is written in relation to everything already written, but I do not know what the next thing will be until I write it. I pause as needed, waiting for that thing to come to mind. By the time I am at the end of the poem, I can finally see everything, like when a scroll has been completely unrolled. I believe this approach is natural, given how my brain works. 

I do understand reading over poems after writing them, to check things like wording, spelling and punctuation. But I do not understand how to redraft a poem. So, I think this developed into a different approach that depends on being calm and centered. I also like threading things together in unexpected ways: like seriousness, joy, and whimsy, for example.

JS: How can parents, families, and allies best support the ambitions of disabled artists?

NS: Disability is complex and I feel I can best speak to this question as a cognitively disabled person. I have both developmental and learning disabilities. Developmental conditions are characterized by delays and learning conditions by disrupted fluency. My biggest challenge as a different kind of learner and a different kind of creator has been being judged as incapable or inadequate and as somebody who needs to be fixed. When you are disabled yourself, you can see how much the world is structured in ways that leave you out, you can see how often you are falling outside of the frame, and you are easily left feeling as if you do not belong. My parents were always my cornerstone. They let me be who and how I am. They encouraged me to understand that I belong. I wonder if my dad was disabled (with undiagnosed dyslexia) and I have noticed I share similar traits with my mom. They may not have known I was autistic, but perhaps they intuitively grasped many things I needed to thrive. Through that acceptance I felt whole at home. They accepted me and encouraged my best self. They did not dramatize or manipulate me at my worst. They were perfectly imperfect. My childhood home was my respite from an overwhelming world, where I could read in my room alone for hours, or I could explore every inch of the woods behind our home with my brothers. This gave me a foundation for accepting myself, which is the key to self-advocacy.

I think the best way parents, families, and allies can support disabled artists is by both embracing and making space for, as Dr. Sara M. Acevedo calls it, our “cunning” and our different and queer ways of being and doing. This can look like giving us plenty of free time when we are young and purchasing the works of creative disabled adults. 

JS: If you had just one sentence to explain why art matters as a form of advocacy, what would you say?

NS: Art matters as a form of advocacy because it shares the cultural life of disabled people.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5. Follow-up! Don’t give up!

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

As President Elect Biden stated, January 6, 2021 is a day that will go down in infamy. The attempted insurrection by Trump supporters shows us how fragile our democracy can be, and remind us that the strength of our democracy resides within each of us.

The democratic process works. Little Lobbyists’ success is a testament to it. Through peaceful protests and rallies, through scheduled and impromptu meetings with our federal and state legislators, through Congressional testimony and press conferences, Little Lobbyists has, against the odds, helped secure the Affordable Care Act and Medicaid for children with complex medical needs and disabilities throughout the United States. We have a voice. Democracy works when we use our voices constructively, legally, and peacefully to create change.

Seeing images of members of Congress with whom we have met being threatened and the defilement of the U.S. Capitol Building, the symbol and structure of our democratic process, is extremely disturbing. We stand with our state and federal legislators, who have stood by us as we advocate for our children with complex medical needs and disabilities and who are devoted to the protection of our democracy.

Here are photos of Little Lobbyists participating in the work and joy of our American democratic process over the last three years. Join us!

[Gallery description: Photos of Little Lobbyists families over the last few years as they speak at rallies & press conferences, meet with congresspersons, and participate in state-level events. Photos were taken inside & outside the U.S. Capitol, inside & outside congressional office buildings, at the U.S. Supreme Court, at special events, and at other locations. Individual photo descriptions appear using the cursor hover feature.]

A young boy holds up a Little Lobbyist sign at a rally on Capitol Hill.

A Little Lobbyists family poses in front of the U.S. Capitol, accompanied by a dog and a drum set.

Two toddler girls pretend to talk on toy phones. A graphic reminds Little Lobbyist supporters to call their members of Congress to protect health care.

A U.S. Senator hugs a young girl wearing a Kamala Harris t-shirt.

The Speaker of the House stands at a podium while a Little Lobbyists founder looks on.

A group of Little Lobbyists families pose in front of the U.S. Capitol after meetings with representatives.

The Senate Minority Leader hands out candy during a Little Lobbyists’ trick or treat day on Capitol Hill.

Little Lobbyists families sit around a table in a congressional office while telling their health care stories to a congressman.

Little Lobbyists members pose with a U.S. Senator after a press conference, with U.S. flags in the background.

An LL mom and her son speak to a U.S. Senator.

A montage of photos of Little Lobbyists families meeting with U.S. representatives is positioned next to LL graphics about supporting health care.

Little Lobbyists families pose on a playground after meeting with their representative.

A Little Lobbyists mom poses with a U.S. Senator.

Little Lobbyists children engage with their congressional representative at a local playground.

A Little Lobbyists mom and her daughter pose with the Speaker of the House of Representatives.

A young boy poses with a U.S. Senator in a meeting room in the Senate.

Two young men who are wheelchair users pose in a hallway of the U.S. Capitol after representing Little Lobbyists at a Senate press conference.

A young boy poses on a tree-lined street near the U.S. Capitol, with the Capitol dome in the background.

A montage of photos of members of Congress reading to Little Lobbyists families during a story-time meeting.

A mom holding a young boy in her arms speaks to a well-known member of the U.S. House of Representatives on a brick-covered city street in Washington, D.C.

A mom and her daughter are positioned next to an LL graphic describing the need for Medicaid.

A young man wearing a Little Lobbyists t-shirt sits in his wheelchair, posing with his dog in front of the U.S. Supreme Court.

A mom wearing a “Health Care Voter” t-shirt poses in front of the U.S. Capitol while hugging her children.

Little Lobbyists families pose in the halls of a House office building with a representative.

A Little Lobbyists family poses with their congressional representative.

Children and parents are seated around a large wooden conference table in a congressional office.

Two young girls are seated at a conference table in front of a marble fireplace. One shakes hands with her Senator.

A group of Little Lobbyists families pose with a U.S. Senator after a meeting on health care.

A montage of photos of Little Lobbyists families speaking out about health care in Congress.

With the U.S. Capitol in the background, a group of speakers stands on a platform at a podium, delivering remarks on health care.

Several Little Lobbyists families pose outside the U.S. Hart Senate Office building, next to its sign.

A founder of Little Lobbyists delivers remarks from a podium in the Capitol building. Flags are in the background.

Little Lobbyists families pose during a press conference, sitting by decorative doors to the room.

A toddler girl in a disability stroller greets a U.S. Senator.

A young girl sits in her wheelchair and makes a phone call while her brother stands next to her. They are in a hall in a congressional office building.

A group of Little Lobbyists families pose in front of the U.S. Capitol building.

A group of Little Lobbyists families, wearing brightly colored LL t-shirts are photographed at a presidential candidate’s campaign rally.

A large group of Little Lobbyists poses with a member of. Congress in front of curtains.

Little Lobbyists pose in front of the office of a U.S. Senator.

Several women pose in front of decorative curtains after making remarks about health care.

Little Lobbyists pose in front of the U.S. Capitol.

Two members of Little Lobbyists speak at a podium in the U.S. Capitol at the launch of a disability rights bill.

Little Lobbyists pose with a new member of the House of Representatives.

A family shakes the hand of a senior member of the U.S. Senate.

A mom poses with her child (who uses a disability stroller) in front of an ambulance during a health care public service campaign.

Several young children are seated at a long legislative dais, flanked by flags.

Little Lobbyists speaking at a rally.

In a black and white photograph, several Little Lobbyists moms pose in front of the U.S. Capitol, during the early days of the efforts to save the Affordable Care Act.

Little Lobbyists hold an impromptu meeting with a member of Congress in a marble-lined hallway.

Members of Little Lobbyists pose for a photo in a beautifully decorated, red-accented room in the U.S. Capitol.

A founder of Little Lobbyists holds multiple LL signs with the LL logo in front of the U.S. Capitol on a beautiful autumn day.

A founder of Little Lobbyists poses with her daughter. Both wear navy blue t-shirts with the LL logo.

A group of Little Lobbyists families in Tennessee pose in a conference room. They wear brightly colored t-shirts with the LL logo.

A mom and her son pose for a photo after a U.S. Senate press conference. The podium and U.S. flags are in the background.

A mom and her daughter pose after a press conference in the U.S. Capitol.

A new member of Congress wearing a vivid turquoise suit bends forward to grasp the hand of a Little Lobbyists child who reaches out to shake her hand.

Little Lobbyists pose in front of the name plaque of a U.S. congressional office.

A young boy is photographed in the hallway of the Capitol.

Little Lobbyists families pose with their legislators after a meeting in California.

A founder of Little Lobbyists holds up a photo of a child who has recently died, while explaining that our families need health care.

A large group of Little Lobbyists pose in Halloween costumes in a hallway of the Hart Senate Office Building during Halloween on the Hill.

A Little Lobbyists mom holds her daughter while posing with the Speaker of the House.

Little Lobbyists share their story in the Senate offices.

A child wearing a Little Lobbyists t-shirt poses with her state legislative rep.

A child receives a handshake from a new member of Congress.

Little Lobbyists family poses with their U.S. representative in a hallway in Congress.

A young girl whose wheelchair has been turned into a beautiful jellyfish Halloween costume poses with her parents and a member of Congress.

A new member of Congress signs an autograph for a Little Lobbyists teenager.

Little Lobbyists at a press conference.

Two young boys smile while riding the Senate train underneath the U.S. Capitol.

A group of Little Lobbyists in Halloween costumes speak in a hallway of a congressional office building with a legislator.

A father and son dressed as superheroes accept a Halloween treat from a member of Congress.

A young woman representing Little Lobbyists speaks at a podium marked with a “Lower Drug Prices” sign outside in front of the U.S. Capitol.

Little Lobbyists visiting a Senate office.

A young boy wearing a superhero costume speaks with a member of Congress in a hallway in one of the congressional office buildings.

A mom holds a young girl who gives a legislator a high-five.

Little Lobbyists kids pile around a large conference table during a Halloween on the Hill day.

Little Lobbyists at a night time rally in front of the Capitol.

A young boy sits on a patterned carpet with state flags after a state legislative press conference.

Senator at the table with Little Lobbyists.

Congressman kneels to meet a Little Lobbyists child.

Little Lobbyists teen speakers before a rally.

Two young boys play near a podium with a legislative seal. American flags are in the background.

Little Lobbyists on a holiday visit in a Senate office.

Several members of Little Lobbyists, wearing colorful LL t-shirts, pose in front of the U.S. Supreme Court, lit from within in the early evening.

Large group of Little Lobbyists families with the family of a congressperson.

A Congressman listens to Little Lobbyists teens.

Little Lobbyists members speak at a press conference inside the Capitol.

A Senator high fives a Little Lobbyists teen after his speech.

Little Lobbyists on the steps of the Capitol at a rally with members of the Senate.

A young boy sitting in a wheelchair and his sibling stand in front of a congressional office door.

Little Lobbyists family poses with a U.S. Senator. An American flag stands to one side.

Member of Congress at a local playground with Little Lobbyists families.

Little Lobbyists families sit and stand along a carpeted hallway in a congressional office building.

A mom holds her young son while they smile for the camera with a new member of Congress.

A Little Lobbyists family poses with the Speaker of the House in a wood-paneled meeting room.

In a marble-lined hallway of a congressional office building, a dad and his kids pose with a U.S. Senator.

Standing before decorative doors in a congressional meeting room, a mom with a stunning tattoo on her arm holds her young daughter while posing with a U.S. Senator.

The then-U.S. Senate Minority Leader distributes Halloween candy to a group of children in his office.

A young girl who is a wheelchair user poses with a U.S. Senator who is also a wheelchair user.

Two children dressed in Halloween costumes wait for a U.S. congressman to sign his autograph.

A Little Lobbyists family poses with a U.S. Senator.

Two Little Lobbyists moms pose with a new member of Congress in a white-brick lined hallway.

Little Lobbyists families and members of the House and Senate standing together on the Capitol lawn on a beautiful, sunny, summer morning.

Sophie Stern & Amy Silverman [image description: A young woman with Down Syndrome and her mother work together at a laptop in their kitchen. The mom has long blond curly hair and glasses and the daughter has her blond hair pulled back and also wears glasses. A vase of daisies is in front of the computer.]

Amy Silverman is a writer, editor and teacher. Her work has appeared on the radio shows This American Life and Here & Now, and in local and national publications. This year she worked with ProPublica's Local Reporting Network on an investigation into services for people with intellectual and developmental disabilities. She lives in Tempe, Arizona, with her husband Ray Stern, a journalist, and daughters Annabelle and Sophie. Find her at amy-silverman.com.

Sophie Stern: I am a senior in high school in Tempe Arizona. I perform with detour company theater and I dance at Dance Theater West and at my school I do theater at my school. I did musicals. I did Annie and Hairspray. I also do theater at detour Company theater. I have been in detour since 2012, we did a lot of fun shows and I have three pets and my sister, dad and mom. I also have a dance class on zoom its called Sophie's days of dance and that has been fun.

Tell me about your family.

Amy: We are a family of four. Ray and I met in the Nineties, we are both journalists and both live like college students -- controlled (if we are lucky) chaos, lots of projects going all the time. Annabelle, 19, is a sophomore at Reed College in Portland, Oregon, and is leaning toward a dance major. She also loves music and art. None of us had ever really met anyone with Down syndrome before Sophie was born (she's now 17, although she'd be quick to tell you 17 and a half) so she just grew up as herself. We didn't know what to expect so we raised her like Annabelle. Of course they are very different -- but also very similar. Sophie also loves to dance (my mom, their grandmother, runs a dance studio here in Phoenix) and is really into musical theater. Sophie wants to be a dance teacher when she grows up. She's also really into YouTube, High School Musical the Series (god help me) and collects both paint brushes and mechanical pencils. She recently dyed her hair blue (herself, that was a bit of a surprise). 

We really love Disneyland, and travel in general, although we are split on the topic of camping (I'm very much against)s. We all love music and make Spotify playlists for each other. 

Sophie: My family consists of four people: me, my sister, Annabelle, and my mom and dad. We like to have dinner together, go on family walks and go to the mall. Right now, we like to watch Christmas movies - our favorites are “Elf” and “Love Actually.”  I like to stay busy! I like to go places, do things and see people. I’m a good sister. I’m also calm, friendly and pretty! I like to watch YouTube, go shopping, dance and take photos. 

Tell me about Sophie's medical needs and disabilities.

Amy: Sophie has Down syndrome, which impacts her in every way -- both big and small. People with DS have different physical challenges. Sophie has a common heart defect and had open heart surgery twice (both at 4 months and 4 years) and she has hypothyroidism. We are a short family and people with DS tend to be short -- so she's doubly blessed there. :) 

Sophie: I was born with Down syndrome which means I have an extra 21st chromosome. I had heart surgery when I was little. 

You're an accomplished writer and journalist, having published in The New York Times, The Arizona Star, ProPublica, and many more. You've also written a book about your life with Sophie, My Heart Can't Even Believe It, which I dearly loved. How has your journalism practice changed since Sophie came into your life? And what does Sophie think of your writing?

Amy: (Thank you for the kind words!) I'll let Sophie answer how she feels about my writing, but I can say that she's a big fan of book events and one of the best things was when she asked me to come speak to her eighth grade classes for career day -- about the book. Turns out, her classmates had no idea that she had Down syndrome or what it is and they'd been in school with her since kindergarten. That was eye opening.

My journalism has definitely changed since I had Sophie. I think aging changes you, too, and I've certainly had my share of that! But the biggest change for me was that before I had Sophie I considered myself very open minded and a champion of social justice but I'd never considered disability as a part of that. I'd done almost no stories about disability. I set out to change that, by creating a blog when Sophie started kindergarten and doing some reported personal narrative pieces, that's my personal jam. 

Things also changed when Sophie was born because my then-bosses at the alt weekly where I worked insisted I take an editing job and give up a coveted staff writer position. I was not happy about it at the time but it wound up being a great thing -- Sophie aside. I have also been teaching for quite a while and I think/hope the combination has made me more compassionate and even helped my own writing. 

Sophie: I think she’s a really good writer. She wrote a book about me and I love it. 

The Silverman-Stern Family: Annabelle, Sophie, Ray & Amy [image description: A family poses at their front door, framed by green leaves of adjacent bushes.]

You've recently been awarded a Knight Visiting Nieman Fellowship from the Nieman Foundation at Harvard. Can you tell us about that and the questions you're exploring about persons with developmental disabilities? I know that you're studying the use of "plain language" in journalism--would Sophie tell us a little bit about her experience reading the news?

Amy: Yes, I'm super excited for that fellowship, it had to be put off til next year but I've been working a lot with ProPublica this year on ways we can better cover people with developmental disabilities, and that led to a conversation about how to make the news more accessible, as well. (And not just stories about bad things that happen to people with disabilities, although that happened to be the topic this time.) 

So I feel like this work this year has helped to prepare me for what's coming. One thing I'm exploring is the role of personal narrative in journalism about people who don't typically get a voice. So we might be doing some storytelling events around this. 

Sophie: My dad tells me about the news at dinner. 

What are the top three things journalists can do to make their writing more accessible to people with developmental disabilities (DD)? 

Amy: Write for them, not just about them. Include people with DD in your stories. Interview them, describe their lives, try to let their voices stand alone. That's not always possible and seldom easy and it involves getting more comfortable -- I was always afraid of offending someone by saying or doing the wrong thing. It takes practice, like anything. 

Make sure the work is accessible for people with hearing and/or vision loss, and also for people who need material presented in a linear style. We are still super early in the discussions around plain language translation. It's tricky -- you really can't automate it, even the plain language translations need to be fact checked and lawyered. To do it right it's time consuming and expensive. But I feel proud that we showed it can be done. 

Use photography and illustration to further the story. For this project his year, we had artists from MAKE Studio in Baltimore illustrate our stories. (They work with artists with disabilities.) The photography is equally impactful and the photographer (who does not have a disability) was super sensitive to her subjects and did some beautiful documentary style photography.

For me, the most important thing is capturing what life is really like -- it's not always inspiration porn, it's not always horror stories. Just as for anyone, it's about the in-betweens. 

How have you engaged Sophie in self-advocacy? Sophie, what do you think about advocating for yourself? 

Amy: Sophie has struggled on and off with having Down syndrome since she was 8, so sometimes she likes to advocate and sometimes she doesn't, which is understandable. Her advocacy is often a second thought -- she just lives her life. She teaches a dance class on zoom because she wants to, not to educate people, though I think that's a nice byproduct. 

I'll let her tell you the story about how she advocated for herself earlier this year during her high school musical, but I'll also give you the link to a poem she wrote about it: “The Law of Words.”

Sophie: I’m good about advocating for myself. I think it’s important to do because that way other people don’t have to do it for me - I can do it myself. 

How has advocacy given meaning to your life and Sophie’s? 

Amy: Recently my sister asked, "What would you have written about if Sophie hadn't been born?" It's a good question. Nothing as meaningful, that's for sure. 

I learn new things every day, not just as a journalist but as a parent and one definitely informs the other. I don't consider myself an advocate -- journalism is about telling the truth no matter what, and sometimes that doesn't fall into line with being an advocate. If my work educates people (particularly people who have no interest in developmental disabilities to start with) I'm thrilled. If it brings about needed change, awesome. 

As Sophie grows up I find myself drawn to figuring out meaningful ways for her to be a part of this work, so it's not just about her. For example, she and I are collaborating on a YA novel about some experiences she had in middle school. 

Sophie: It makes me feel good about myself and my abilities, and it has helped me do things I wanted to do. 

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

Amy: Living your truth out loud for all to see. 

Sophie: Advocacy means when you stick up for someone. 

Note: Sophie Stern composed her answers to the interview questions in conjunction with Sarah Hales, her speech therapist. Sophie wrote her bio on her own.

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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. 

Anian & Meeka [image description: A Black boy with Down Syndrome hugs his mom, who wears glasses and has short light hair.

Meeka Caldwell is an author, wife, mother, and advocate for special needs and for the inclusion of Black and Brown people in the disability community. Noticing a need for more diversity-embracing literature, she set out to write A Friend Like Anian to highlight her Black son with Down Syndrome and show how positive community interaction fosters a greater understanding of people with disabilities. Trained in Human Resources, Conflict and Negotiation, Meeka brings her passion for people and community into every aspect of her professional career as well. She lives with her family in Upper Marlboro, Maryland. She will continue to add to the series A Friend Like Anian and fight for the rights of all those with complex medical needs and disabilities.

Tell me about your family.

We are a blended family. My husband and I have six children altogether, and they range from Tre (24), Miya (23), Zaire (20), Aven (9), Prix (8), to Anian (6). When we can all be together, we love to just cook, watch TV, play games, laugh, bond. It's not easy bringing everyone together, but we try to spend as much time together as possible. Anian right now is so busy. He just loves doing stuff, LOL: playing with our dog Sasha, helping me cook, playing with his sisters. He’s just very rambunctious, mischievous, and hilarious! We'll miss getting together for the holidays this year, but we have Zoom and Facetime! 

Tell me about Anian's medical needs.

Anian was diagnosed with Down Syndrome. To date, he hasn't had any serious medical issues. What we are working on the most is speech therapy. He has limited verbal speech, but he can definitely communicate. He knows some sign language and is always open to learning more! I am currently looking for a class where I can learn virtually and then be able to teach him. 

Anian & his sisters. [image description: Standing in front of a fountain are two young Black girls with cornrow braids pose on either side of a young Black boy with Down Syndrome.]

You've written two children's books about Anian. What inspired you to write them? Do you plan to write more? 

When Anian was younger and first starting school, I looked for books about Down Syndrome to read to his class. I noticed they were difficult to find and impossible to find with a Black child with Down Syndrome. I wanted him to be represented in my advocacy. We searched and searched and, since we couldn't find one with a Black child, we decided to write our own, A Friend Like Anian. I never thought I would be an author, but, honestly, I love it. I'm telling his story very simply; it's all derived from his everyday life. I absolutely plan to write more. With our second book, A Friend Like Anian: First Day of School, we went with an entirely new look that I think is spectacular, and I can't wait to continue the series. 

I love all the ways you've seamlessly blended disability issues into A Friend Like Anian, especially that Anian has multiple ways to communicate: speech, pointing, and sign language. That really gets to the heart how important it is that parents, teachers, and friends accept multimodal communication strategies. How has Anian's community helped him? 

Cover of A Friend Like Anian. [image description: Illustration of a young Black boy with Down Syndrome posed in front of neighborhood houses.]

I really appreciate our family, our church community, and the school community. Locally, Anian is known as “Boo Thang.” and his story has been on the news and in the local paper. He is truly embraced, supported, and loved-on all the time. It's nice when you develop those community ties, especially with our local Down Syndrome organization, PODS (Parents of Children with Down Syndrome) of Prince George’s County, which is working hard to advocate and support all of our families. Because so many people know Anian, they do indeed speak to him when they see him. They usually recognize Anian before the rest of us, LOL. And it's great because he is a part of the community like everyone else, so people engage with him, which definitely helps his communication. 

How did you first become an advocate? What steps have you taken to increase your skills? 

I think we first found out he had Down Syndrome when I was 15 weeks pregnant. I googled more than I ever have and reached out to so many to get questions answered, for comfort, and then to learn from other parents things to be vigilant about. Education and healthcare being the top items on the list, I made sure to connect with his doctors and school community to get what was needed. Over the years, I learned from other parents, especially, and, of course, from taking the Arc of Maryland’s Partners in Policymaking program in 2020, which has helped tremendously with understanding how to work with local and state representatives to petition for the rights of every child with a disability. It's been an eye-opener, and I'm always trying to increase my skills. I am currently working through a Master IEP (Individual Education Plan) course because that's a hurdle, and I'm always trying to understand more about this process. 

Cover of A Friend Like Anian: First Day of School. [image description: Illustration of a Black mom with glasses and short light hair hugging her son with Down Syndrome in a child’s bedroom.]

How have you engaged Anian in self-advocacy? 

Since our first Down Syndrome Walk in Charles County when Anian was a few months old, we have made sure to advocate as much as we can as a family. I think Anian is learning that these events have something to do with him (LOL), and, as time goes by, he will certainly develop his own voice and learn how to advocate for himself. I can't wait! 

How has advocacy given meaning to your life? 

I feel like I've always been an advocate for my children. It's another part of being a parent, of being human, really. My eight-year-old, Prix, was born with a submucosal cleft palate. I had no clue what that was, and I had to advocate on her behalf for medical care and therapy. Also, reaching out to new parents and being a support for them truly make my heart glad. It's so much information and so overwhelming at times for new parents, and I understand and want to help. I think advocacy gave us a greater meaning as family. 

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

Showing up with your presence, voice, and knowledge for the ones that need it the most. 

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Jeneva & her son Rob [image description: A white 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. 

Rob Stone, a member of Little Lobbyists, at a physician appointment last year. [image description: A young man sits in a wheelchair, advocacy buttons decorating his vest & headrest. He wears an aqua shirt and has a tracheostomy tube visible. Behind him are an examining table and medical supply cabinets.]

The Affordable Care Act (ACA) appears here to stay--that’s the good news! It has been the subject of multiple lawsuits and dozens of bills that have attempted to overturn it. On December 10, the U.S. Supreme Court heard oral arguments in the latest effort to do away with this crucial piece of legislation, yet court-watchers believe the justices signaled a willingness to let the law stand. We can breathe a small sigh of relief, for the moment.

If you need health insurance, keep in mind that ACA open enrollment has been extended to August 15! You can sign up or renew your plan on Healthcare.gov today! According to the Urban Institute, the average federal subsidy for individuals who purchase their ACA plans through state marketplaces is $5,500, and the recently passed American Rescue Act has extended subsidies EVEN FURTHER, so check your eligibility for subsidies - even if you checked earlier this year! Need advice on selecting a plan? Check out these helpful tips. 

Why does the ACA matter? The law has been the victim of a decade-long misinformation campaign, but it provides tons of benefits for Americans. Most people know these basic safeguards, but there are more: protection for people with pre-existing conditions, no caps on annual or lifetime costs, and the ability to keep your children on your plan through the age of 26. 

These benefits apply not only to ACA marketplace plans, but to ALL insurance plans issued in the U.S. The ACA has been a game-changer as insurance reform.

The ACA also mandates 10 Essential Benefits to be covered by all health care plans issued in the U.S., which include the ACA marketplace, private, government, and employer-based plans. If the ACA were ever overturned, many insurers would opt out of these benefits:

• Ambulatory patient services (outpatient care you get without being admitted to a hospital)

• Emergency services

• Hospitalization (like surgery and overnight stays)

• Pregnancy, maternity, and newborn care (both before and after birth)

• Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)

• Prescription drugs

• Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)

• Laboratory services

• Preventive and wellness services and chronic disease management

• Pediatric services, including oral and vision care 

When the ACA was passed in 2010, it provided funds for state Medicaid expansion. However, many states refused those funds, and, thereby, hurt their own citizens. In those states that passed Medicaid expansion, the ACA helps both rural and urban hospitals stay open and maintain quality care standards. When people are struggling to make ends meet, they can’t pay their medical bills. More people eligible for Medicaid means more dollars to support the compassionate missions of hospital emergency rooms, where no one is turned away. 

In addition, Medicaid expansion under the ACA pays for school nursing for all children, as well as individualized nursing for children with complex medical needs and disabilities, and the physical, occupational, and speech therapies children require. If Medicaid is cut, your child’s school nurse could disappear. 

This holiday season, let’s all be thankful that the ACA has withstood so much in its decade of existence and that, under the incoming Biden Administration, its protections are strengthened, ensuring more Americans have access to affordable, quality health insurance. 

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Jeneva Stone is the Little Lobbyists’ blog manager.