The cover of Kelley’s book, white and blue lettering on a bright green color gradient. To the right is a color photo of Kelley, a white woman with red hair who wears glasses and poses with her arms folded over a stack of books.

Kelley Coleman is the mom to two amazing boys, one of whom has multiple disabilities (including an as-yet-undiagnosed genetic syndrome, cerebral palsy, autism, CVI, epilepsy, and more). Her book Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports stems from her own experience, giving parents the tools to spend less time navigating stuff and more time loving their kids exactly as they are. 

This honest and relatable book is a roadmap to parenting a disabled child, covering all the essential topics we struggle with: diagnosis, school, doctors, insurance, financial planning, disability rights, and life as a parent caregiver. And there are templates you can use! And tons of links to resources in the appendix!

Kelley’s empathy shines through, page after page. As a reader, I never felt that she was telling me how I should be doing anything. Rather, her voice was like the spirit guide to parenting I’ve always wanted, telling me how I could do all the hard things, making suggestions and holding my hand. After 20+ years as a parent-caregiver, I still don’t know what I’m doing half the time, but I keep trying. And that’s one of Kelley’s messages to our community–keep going, try and fail, and try again. You can do it.

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Black & white photo of a younger Kelley and her infant son Aaron. Their faces are in profile. She is kissing his forehead.

JS: Clearly, this book arose from your personal experiences struggling with the system, but was there a particular "aha!" moment when you realized, I have to write a book?

KC: I think all parents of kids with disabilities have been told we should write a book. I never thought I would write a book about how to do all of the stuff - it just sounded so boring. But, after a long night with Aaron having medical issues and none of us getting much sleep, I hit a wall. I realized that the only way we got through everything was by knowing how to do all of the stuff. That day, I realized that I needed to write the book. I wanted everyone to have access to the information of how to tackle the paperwork and the planning - the stuff that we all have to learn from the ground up, and that our kids depend on, and that is just so overwhelming. I realized right away that it was the opposite of boring - it’s life-changing. 

JS: One of the things I loved about this book was your honesty: that you're still learning. Of all the topics you covered, in which area, personally, do you feel you're succeeding right now? In which do you struggle the most?

KC: Because I’m still learning every day, that answer will change every day. Today I feel like I’m succeeding with the social services piece. I just sent in our annual mountain of paperwork, and have found ways for our social service system to spend less money getting better supports for my son. That feels great. And, where am I struggling the most? The disability rights and advocacy piece is still a big learning curve for me. I’m always working on the balance between being my son’s advocate and teaching him to advocate for himself. His communication is emerging, and I find that I need to take more time to follow his lead and to build self advocacy into every part of his life. It would often be faster for me to power through, but then I’m not teaching him. The more I slow down, the more he teaches me. 

JS: You emphasize the joy of raising disabled children, which is so wonderful! If books are surrogate children, as some say they are, writing which part of the book gave you the most joy?

Aaron, who wears glasses and has a medal on a ribbon around his neck, raises his hands up in triumph. He is in a classroom with a screen behind him that shows gold confetti.

KC: Writing a book - just like raising a child - is all the things. So much joy - and also every bit of the ups and downs that bring you to that joy. Connecting with leaders in the disability community was an amazing highlight. These are people I’ve looked up to for years, and when they said yes to being interviewed, I was humbled and appreciative. If Judy Heumann invites you to her house, you say yes. I was so fortunate to be able to spend time with her in person before she passed. 

JS: What are the three main takeaways you'd like families to absorb from this book? 

KC: It’s hard to choose three. But since you asked: 

1. Learn about disability from disabled people. It shouldn’t be revolutionary to seek firsthand experience, but too often we forget that piece. When we learn from disabled people, we connect to a community and find role models to follow. 

2. Caregiving is a job. All of this paperwork and planning may never be fun. You get better at it. You set up systems. And that allows you the space to be a parent, to enjoy your child, and to separate the mountains of paperwork from the fun of parenting. 

3. Connect with other parents in this situation. We need to stop reinventing the same wheels. Chances are someone has done this before and can show you a better way. And, when you learn a better way, share that with everyone you know. We’re in this together. 

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Kelley Coleman is a feature film development executive turned author and advocate for individuals with disabilities and parent caregivers. She serves on committees for Children’s Hospital Los Angeles, the Los Angeles Unified School District, and Canine Companions. She lives in Los Angeles with her husband, two boys, and her son’s trusty service dog. Learn more about Kelley by visiting her website and following her on Instagram and Facebook.

Matthew Plantz at a local shopping mall. He wears a blue jacket and glasses, and sports a beard and mustache. Storefronts are behind him.

Our children with complex medical needs and disabilities will grow up to become adults with disabilities, so it’s important that we, as Little Lobbyists families, listen to disabled adults. Those of us who are parents may not have experienced life with a disability until our child did—who better to help us understand how to advise and guide our children than disabled adults? 

Matthew Plantz is a lifelong advocate for individuals with intellectual and developmental disabilities at the local, state, and federal levesl. He is interim director of People on the Go, and facilitator for People Power, a local self-advocacy organization. He serves on the Howard County Autism Society Board of Directors, Community Advisory Committee/Kennedy Krieger and the Maryland Inclusive Housing committee. Matthew, a resident of Maryland, shared with me his story about the importance of inclusion.

Hi Matthew! Tell us about yourself.

I'm 40 years old. I like going to baseball games. I like being a self-advocate. I like reading books: mysteries, books about World War II, and the Bible. I also like going to church. 

Tell me as much as you feel comfortable sharing about your medical needs and disabilities.

I've been legally blind since I was born 14 weeks premature. They tried to fix my eye. They couldn't do it, and they gave me too much oxygen. I've got ADHD, and in 2016 I developed diabetes type one, insulin dependent. I also have had mental health issues. I identify as part of the developmental disability community because I have an intellectual disability.

You’re on the board of directors of People on the Go, Maryland, an organization that is committed to ensuring that people with disabilities can live in the community of their choice. What are the biggest obstacles disabled people face to community inclusion? 

I was the vice chair on the board of directors, and I recently got promoted to interim president, until we hold elections again. 

We deal with a broken system not only here in Maryland, but all over the country. I mean, we've dealt with it for years. The underfunding of our staff. We can't get adequate staff. We can't retain adequate staff. If it's one thing Covid-19 has taught us, it brought to light what the disability community has known for years, that there's just not adequate staffing. 

There’s also a lack of understanding. And I mean on federal, state, and local levels. If you haven't been in our shoes, haven't walked the walk we people with disabilities have had to walk. It gets me a little upset when people say they understand, because I'm thinking to myself, “No, you don't understand. There's no way you can if you haven't had to walk in our shoes.”

What other barriers have you faced?

People tend to go to other people, and I don't get looped in on the conversation. It's like people with disabilities are kept out of discussions about themselves. My doctor knows he has to come to me first, not to my staff. I don't like dealing with middle men. Everything gets filtered through me first. Now, if my dad and my mom are communicating about me, that's fine. At least my mom loops me in on everything. But barriers between Human Services and the medical community need to come down because they don't always work together to where they understand a whole person.

Matthew Plantz wears a black baseball cap and a blue t-shirt. The photo displays the words, “I got my vaccine! A shot in the arm for the disability community.”

The disability community depends on Home and Community-Based Services (HCBS) in order to live in their communities. But there are lots of obstacles to getting HCBS. What needs to change?

HCBS needs to expand over the nation. A couple years ago, I heard of a study, and I don't know if it's still accurate, but I'm one of the few people who was lucky enough to get community-based services and I do not, I really do not think that HCBS goes far enough. 

The Biden Administration proposed all these great moves, but I don't think it ever went anywhere because I don't think lawmakers wanted to deal with it. The Biden Administration proposed that, I’ll give you an example, if my parents moved to Delaware, I could move with them. That the services would be interchangeable because waiting lists for services would be gone.

But my parents gave me an example: If they were to move to Delaware right now they could not take me with them. I would have to stay here in Maryland because if I went to Delaware, then I'd have to get reassessed and start from the ground up. I would have to reapply. If I were not disabled, moving wouldn't be a challenge. My parents don’t want me on a waiting list, so they’ve said they’re sticking right here. 

In the next Congress, we all hope a bill that increases money for Home and Community-Based Services will pass. Can you explain to Congress why that's so important for our community?

I think it would bring us out of the Dark Ages here in the United States. It would expand the services and make them better nationally. I'm gonna give an example: Here in the state of Maryland, there was a survey done that said it would be easier to help people in the community than have them in institutions. I mean, the survey I'm quoting might be old, but I think it's cheaper to have me at my house than it would be in an institution.

Too often parents and caregivers speak for people with disabilities, rather than with them. How did you first learn the power of speaking for yourself?

Well, I started out at Maryland School for the Blind. The sidewalks there were so bad, it wasn't even a joke. I told the president at the time who got me a meeting with the board of directors and I requested more money for the sidewalks to get improved. So that's my first experience with advocacy. It made me want to get more involved.

How has advocacy given meaning to your life?

I believe I was put on earth for such a time as this. I was not expected to live, I was born so early. My doctors wouldn't even get my parents a birth certificate until they knew I would live. So, I mean, to go from being almost on death’s doorstep, literally, to being an advocate is really amazing for me. 

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

I would say it would give people with disabilities a voice and some freedom.

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 Jeneva Burroughs Stone is the blog manager for Little Lobbyists.

Rob on the shores of Lake Champlain. Rob is wearing a camouflage-print baseball hat. His brother Castin is leaning into the photo. In the background are birch trees, the big surface of the lake, mountains in the distance, and light scudding clouds in the sky.

Rob Stone is an active member of Little Lobbyists. Rob’s goals upon leaving high school were to become a health care and disability rights advocate, and an artist with his own art website. Rob has a rare disease, dystonia 16. Due its complications, Rob uses a wheelchair to get around, uses a tracheostomy to assist his breathing, takes his food through a gastrostomy/jejunal tube, and needs a lot of assistance to use his arms or hands. 

Yet Rob is thriving and having a great life! He’s been able to make progress on all his life goals. Rob has been lucky enough to qualify for Maryland’s Home and Community-Based Services waiver, as well as state Medicaid supports for home nursing, and these programs enable him to live at home as independently as possible.

When Rob was young and his disabilities required fewer supports, his mom, Jeneva, was able to take him and his brother Castin to visit his relatives in Vermont for a couple of weeks at a time. Rob’s grandparents have a house on Lake Champlain, and that’s one of Rob’s favorite places in the entire world. 

Once Rob needed a tracheostomy, though, and needed overnight nursing support, Jeneva was unable to do that. Medicaid is a life-saving, wonderful program; however, it is a state/federal partnership program, which means that each state develops its own state plan and waiver services, eligibility requirements, and number of persons it will serve. The federal government approves that plan, as long as it falls within general federal guidelines, but no two state plans or waivers are identical. Rob needs day and night nursing support, as well as assistance with all the tasks of daily living, durable medical equipment, medications, and many other needs.

Rob as a young boy enjoying Lake Champlain—he’s lying in a child-size plastic flotation “boat” in bright pink, blue and yellow, and wearing a blue life-jacket.

On a practical level, that Medicaid is a state-by-state program means that Maryland Medicaid will not pay for services when Rob is in Vermont. He would have to hire his own overnight nurse, and the retail cost of that would be $400 to $500 per night. To go to Vermont for a long weekend (just, say, four nights) would mean spending $1,600 to $2,000 on just Rob’s overnight needs. 

For the last two years, though, Rob’s mom and dad have brought Rob to Vermont and done the overnights (and days) themselves, giving him three full days in paradise, but leaving everyone pretty exhausted–except Rob, of course! Which is the point of the trip. 

On Rob’s trip to Vermont this Fourth of July weekend, Rob expressed an interest in moving to Vermont. 

A lot of families are under the impression that Medicaid is solely a federal program, and that they can “transfer” their child’s HCBS Medicaid waivers and services to another state, should the family wish to move.

Sad to say, that isn’t true. Families have to end their child’s services in their old home state, and then reapply for Medicaid in a new state. Any state can say, ‘Hey! We only want to serve 500 people in our Home and Community-Based Services program,’ and leave 1,000 people on the state’s waiting list for services. If you move from another state, too bad, because you become the 1,001st person. You have to wait for those who currently have waivers to move, pass away, or, in some cases, age out. 

Rob with his aunt and uncle. Rob is seated in his wheelchair, on which is perched an American flag. He’s holding a “Grand Isle Fire Department” frisbee. The broad stretch of the lake is behind him, with mountains in the distance.

So Jeneva had to tell Rob that she didn’t know when, whether, or how their family could make such a move, even if they all wanted to. How long was Vermont’s waiting list? If Rob had to wait even a very short period of time, say six months (which would be a miracle!), how could they afford even his overnight care (@$10K)? Rob’s parents couldn’t do both his day time care and his overnight care for six months on their own and still hold jobs, sleep and take care of themselves–and most states do not allow family caregivers to be paid to provide nursing care. And even if the wait were short, would Vermont’s Medicaid waiver provide skilled nursing services for Rob? States can exclude nursing care as a covered Medicaid home service. 

That’s what it’s like for your life to depend on your zipcode. People with disabilities (and their families) who rely on Medicaid Home and Community-Based Services cannot even think of moving from one state to another–not for family reasons, not for a better job–because Congress will not allocate enough federal funding to the states for HCBS waivers to eliminate those waiting lists. Over 820,000 Americans are waiting to live in their communities, across the country. The Better Care Better Jobs Act, which promised to end waiting lists and provide better paying jobs for home health care workers, has been stalled in the Senate for over a year. 

As a result of the Supreme Court’s Dobbs v. Jackson decision this June, more and more Americans are finding out what it’s like for your rights and your life to depend on your zipcode. We all need to stand together and demand that Congress protect our civil rights to live in the community of our choice–disabled Americans have faced this gut-wrenching dilemma now for decades. No one should ever have to face it. Fund the Better Care Better Jobs Act now!

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Rob and Jeneva Stone are members of Little Lobbyists. Jeneva is the Little Lobbyists blog manager. 

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

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

Tell me about Al and your family.

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

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

Tell me how SDAN started and how you became involved. 

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

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

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

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

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

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

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

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

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

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

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

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

You can also join SDAN!  

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

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

How has advocacy given meaning to your life?

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

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

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

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

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

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

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

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

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

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

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

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

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

Tell me about your family.

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

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

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

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

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

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

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

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

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

 How have you engaged Matthew in self-advocacy?

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

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

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

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

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

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

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

Ron Carlson [image description: A white-appearing man speaks at a lectern with a microphone]

Given the Biden Administration’s commitment to Home and Community-Based Services (HCBS) and ending Medicaid waitlists, our country will need more and better-trained direct care workers. These home care workers will be vital to the ability of our medically complex and disabled children to survive and thrive in their communities. Direct care workers provide assistance with the tasks of daily living, housework support, activities outside the home, medical support, and other duties.  

Ron Carlson is the Executive Director of the Maryland Regional Direct Services Collaborative. With a background in government, public policy, and public health, Mr. Carlson has a great grasp of the issues our families will face as we build support systems for our loved ones. 

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Tell me about the Maryland Regional Direct Services Collaborative and its mission.

The Collaborative has set its mission to assure the availability of a well-trained direct service workforce to meet the needs of older adults and persons with disabilities across Maryland and DC. The Collaborative got started in 2016 with a regional meeting which brought together key leaders from Maryland Governor’s cabinet, members of the Maryland General Assembly, senior representatives from educational institutions, the hospital and long term care communities, and unions, as well as direct care providers and several provider membership organizations. 

The direct services workforce shortfall is not a new one. It had lingered relatively unattended for nearly fifty years. The call to action issued at the 2016 meeting resulted in an agenda being put in place to tackle the key problems confronted in both Maryland and DC. Corrective steps were directed at enhancing worker wages and benefits, strengthening training and education opportunities, and increasing the supply of workers. That agenda continues to evolve with progress being made on each of the key issues. The Collective has also contracted with a research firm to conduct a comprehensive workforce assessment in our region. 

What are the biggest challenges to building and sustaining a direct support workforce for children and adults with complex medical needs and disabilities?

If we are to see measurable progress toward accomplishing the mission, I see three big challenges that must be tackled.   

First is the imperative to substantially change the levels of public support for the direct services workforce. This change rests primarily, but not exclusively with the Medicaid program. Direct services work is demanding, but the pay is low. An increase in pay levels and the availability of supportive training services are essential. 

Secondly, while public and non-profit stakeholders are actively lending support to enable the frontline workforce, noticeably absent is any expressed interest or involvement on the part of the larger business and corporate communities. While the pandemic has underscored an increased importance on the availability of home and community-based services for employees of business organizations, there is an apparent disinterest on the part of the corporate community to invest and strengthen the direct services workforce as a whole.  Without meaningful support from this part of the private sector, I doubt we’ll see any appreciable change. 

Thirdly, a critically important challenge is that of rebuilding and strengthening training and education programs geared to this frontline workforce. Without more clear and affordable career pathways provided by employer-sponsored internships and apprenticeships, most if not all recruitment and retention efforts will fall far short. One of the building blocks is to enhance the roles carried by the community college. These schools should serve as the centerpiece for training. That is not the case now.      

What can our members do in their states to ensure a robust direct support workforce? 

Drawing on my experience to date, I’ve learned a couple of things. First, if the workforce is to see changes that make a positive difference, it’s important that both the general public and the public policy makers understand the problem in terms they can personally and professionally understand. This means elevating attention as to how having the right workforce available positively affects children, families and the community. For the policy maker who has to decide where and how funds are to be spent, answering the “return on investment” question is core.   

Personal interest stories must be told, retold, and shared via the social networks, the news media, and meetings with legislators either virtually or in-person. The op-ed piece in the Washington Post earlier this month, “My son’s home health worker is the face of infrastructure” is one terrific example. More of these will make a difference. Experience tells us that while legislative change is driven by research and good data analysis, the more powerful change agent is the attention-getting story that touches the policy maker in a very personal way. 

A meeting of the Maryland Regional Direct Services Collaborative [image description: A large group of people sit at tables arranged in a square in a community college meeting room.]

Tell me about the Direct Care Workforce Innovation Program which recently passed the Maryland General Assembly.  What do you hope it will achieve?

A year ago, Senator Guy Guzzone, Chair of the Senate Budget and Taxation Committee, introduced “The Direct Care Workforce Innovation Program.” Due to the shortened legislative session brought on by the pandemic, Senator Guzzone needed to reintroduce the bill this year. It was easily passed by both houses and then brought to enactment with the Governor’s approval in May. 

The legislation will provide a new resource to community-based organizations in the amount of $250,000 each year for the next several years to help them build the needed workforce.  The program will be implemented by the end of this year to allow awards up to $50,000 on a matching basis for at least three years. I see this support substantially helping organizations come up with new ways and means for tackling the challenges they face in both initiating and bolstering their recruitment and retention strategies. Very importantly, and in keeping with the objective of building new approaches, the legislation calls for the coordination of these new programs with educational institutions and with the Maryland Department of Health.  

It is expected the grant announcement launching the initiative will come sometime this fall. Coincident with the announcement, the Collaborative will conduct a webinar to highlight the program and outline how it will be implemented. For more information on the webinar, check our website and sign up for our newsletter. 

What inspired you to become involved in direct services advocacy? 

I became involved as an advocate for change while serving as the Donor Representative for the Paul R. Willging Endowment at the Howard Community College in Columbia, Maryland. The Endowment provided scholarship support for students pursuing health care careers in the care of older adults. It wasn’t long before I learned about the direct care workforce problem. While this end of the workforce delivers nearly 60% of patient care in and outside long-term facilities, direct care has a shortfall of 40%. Having spent my career in public health and health care financing, I knew well the issues confronting the acute care and primary care parts of the system, but was unaware of this part of the delivery system. It was astounding to find that so little attention had been given to direct care issues.   

By setting up the Collaborative and bringing together a strong cross section of the professional, educational, and business communities, both public and private, I thought that we could and would find the ways to close the gap.

How has advocacy given meaning to your life?

Over the past many years, I have worked to highlight and bring to life a social innovation agenda for positive change. I have long been an advocate to challenge the norms, and to argue for and present ideas aimed at strengthening a community’s ability to address problems, especially those struggling to find pathways to a better quality of life. This has included setting up “the business roundtable” to grapple with the tough issues. It has meant serving on state-wide and county level advisory committees addressing issues to improve population health. It has meant conducting community wide needs assessments to identify shortfalls, and highlight areas where communities can target interventions that work. While the challenges are endless, the occasional victories are personally and professionally fulfilling.   

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

Advocacy is working to bring about those changes in communities that improve the quality of life for those in need.    

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

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Ron Carlson has served as the Executive Director of the Maryland Regional Direct Services Collaborative for the past three years. Previously, he served as research associate with University of Maryland Baltimore County’s “The Hilltop Institute,” and was director of the Policy Analysis Center established by the Horizon Foundation. Mr. Carlson was the president and founder of the Institute for Community Health focused on both community and population health improvement. He earlier served as the director of community health with the Center for Health Policy Studies and was senior researcher for the National Academy of Public Administration. Mr. Carlson was a founding member of the Senior Executive Service and held senior health care policy positions in the United States Department of Health and Human Services for more than three decades.  

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.

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. 

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.

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. 

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. 

Photo of Alice Wong, an Asian American woman in a power chair. She is wearing a blue shirt with a geometric pattern with orange, black, white, and yellow lines and cubes. She is wearing a mask over her nose attached to a gray tube and bright red lip color. She is smiling at the camera. Photo credit: Eddie Hernandez Photography

Jeneva is thrilled to interview Alice Wong (she/her), a disabled activist, media maker, and consultant. Alice is the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. She is also the editor of Disability Visibility: First-Person Stories from the Twenty-first Century, an anthology of essays by disabled people, a book Jeneva has been reading.

Tell me about yourself. 
I’m the daughter of Chinese immigrants and the oldest of three girls. We grew up in Indianapolis, Indiana, and I loved to read and write as a young person. The library was one of my favorite places in the world. As a disabled kid, it was a refuge. When I was a teenager, I knew that life was going to be better for me in California, so I moved to San Francisco for grad school in medical sociology, worked at UC San Francisco as a staff research associate for about 15 years, and ended up working full-time with the Disability Visibility Project a few years after creating it in 2014. And here we are now! I did not expect this path in my life, but am loving every minute of it. I am now who I have always meant to be. 

Tell me about your medical needs and disabilities.
I have had a neuromuscular disability since birth and could walk until age 7 or 8, and I then used a manual wheelchair and quickly transitioned into a power chair. Over the years my body has weakened, so I started using personal assistance services full-time and using a Bi-Pap machine to help me breathe. At first, I only needed the Bi-Pap, a form of non-invasive ventilation, at night, but using it all day gives me more energy and ventilatory support so I can keep doing what I want to do. 

Image of the cover of Disability Visibility: First-Person Stories from the 21st Century. The cover is a set of overlapping pink, purple, blue, green & yellow triangles, over laid with black sans-serif text.

Tell me about the origin of the Disability Visibility Project: When did you first imagine it? What did it take to get it rolling? How did the book evolve?
Originally it started as a one-year campaign to collect oral histories from the disability community in the lead-up to the 25th anniversary of the Americans with Disabilities Act in July 2015. I formed a community partnership with StoryCorps, an oral history nonprofit because I wanted us to have a chance to tell our own stories and create our own history. I initially thought I would interview people I knew who I thought were super interesting and cool in the SF Bay Area, and by using social media I was able to encourage disabled people across the country to participate as well. Right now people can still participate by using the StoryCorps app, and information can be found on my website. The DVP has grown and evolved into other activities such as guest essays, Twitter chats, a podcast, and other collaborations. I self-published an anthology in 2018, Resistance and Hope, and for the 30th anniversary of the ADA, I published a series of essays by disabled people of color on my website called #ADA30InColor with an audio and plain language version. 

 Disability Visibility:  First-Person Stories from the Twenty-First Century came about when an editor from Vintage Books, Catherine Tung, emailed me out of the blue in 2018 asking if I had any interest in working on an anthology and I said, “YES!” After developing a book proposal and finding an agent, I got a book deal with them and worked on it for about a year and a half. This book is a labor of love by me for all of us. There’s a free discussion guide and plain language version on my website by disabled writers Naomi Ortiz and Sara Luterman, respectively. I hope it gives people some comfort and joy during these difficult times.

In your introduction to Disability Visibility (the book), you write, “To me, disability is not a monolith, nor is it a clear-cut binary of disabled and non-disabled. Disability is mutable and ever-evolving.” How do you hope “disability” will be imagined, categorized, or defined 100 years from now?
I’m so excited and ready for the future! I believe disability will expand and change–technologies and other adaptations may change our lives, but that doesn’t change the fact we are disabled in biological, cultural, or political ways.  

You also write, “Storytelling can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change.” Storytelling is at the heart of Little Lobbyists—telling the stories of our children and helping our children tell their own stories. For some of our children, telling their own stories will be easier than for others. What can we, as parents, do to assist our kids with the essential task of self-narrative?
I would encourage parents to help their children discover their interests and passions. When you care about something deeply, it becomes part of your story and advocacy. I strongly believe each person can tell their story in their own way, whether it's from visual communication, gestures, or facilitated by a person or assistive technology. It's our responsibility to one another to not place certain forms and formats as “better.” We should meet people where they are in the ways they choose to communicate with the world.

 It’s important to remember  there will be a lot of kids who do not feel comfortable expressing themselves or being an advocate just yet and that’s ok! It took me until my early 20s before I thought of myself as an advocate. Also, no disabled person should ever feel obligated to be an advocate or tell their story–this should always be a voluntary activity. On another note, I was not able to express my anger and sadness as a child because I had to be this “compliant” patient and child. I grew up very fast and performed in front of adults to meet their expectations. There needs to be space for kids to share their stories and feelings even if it’s not what parents or the public expect.

 What do you consider your first act of self-advocacy?
It’s hard to remember because like so many medically complex and disabled kids, I had to be an advocate at an early age before I ever knew the word. It was a means of survival in a world where I was made to feel acutely different. I had great parents and social support, but they could not understand my experiences. One of my first public acts of advocacy was writing a letter to the editor of Time magazine in the 1990s about accessible public transit, and it might have been the first time I wrote about a disability issue. And it was printed in the magazine, so that was a thrill! 

 How has advocacy shaped your life and given meaning to it?
Advocacy became less about my own individual needs and more about structural and institutional change. Advocacy connected me to communities and other people who had similar goals. I’ll always be thankful for being part of so many amazing communities because we are truly powerful when we work together.

 If you could define advocacy in a single sentence, what would that be?
Advocacy is telling your truth and caring for others. 

You can follow Alice Wong on Twitter @SFdirewolf @DisVisibility, and on Instagram @disability_visibility

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Jeneva and her son Rob: Jeneva is wearing a blue scarf and grey dress, and Rob is seated in a wheelchair with an orange shirt and 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. 

Claire and her siblings

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

Tell me about your family. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In these troubling times, what gives you hope?

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

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Jeneva and Rob on a visit to the Senate office buildings

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

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

Ken Capone, Director of People on the Go of Maryland

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Samantha and Little Lobbyists Josephine

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

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

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

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

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

Josephine riding her bike.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Laura Robeson and her son, Danny

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

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

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

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

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

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

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

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

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

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

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

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

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