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. 

Co-founder Elena Hung poses outside the U.S. Capitol [image description: A woman with black hair and a grey tweed coat holds three signs with the Little Lobbyists’ red, white & blue logo on them]

In 2017, Elena Hung and Michelle Morrison, parents of children with complex medical needs and disabilities (Xiomara and Timmy), were worried about the future of health care, given the frightening rumblings out of Washington DC. The two sat down at a kitchen table and put their heads together: How could they get their elected officials to understand how important programs and protections like the Affordable Care Act (ACA), Medicaid, the Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA) are for families who rely on specialized health care, inclusive education, and accessible public spaces?

A simple plan was formed: collect photos and stories of kids with complex medical needs and disabilities from around the country and take them directly to their legislators. Deliver them in person with their own kids (and their ventilators, oxygen, wheelchairs, walkers, leg braces, feeding tubes, and more in tow) so lawmakers could see first-hand who needs the protection of the very laws and programs under threat. 

Elena and Michelle gathered over 150 stories from other families across the nation to hand out to legislators. Their first visit to Capitol Hill was in June 2017. Five families from the DC metro area gathered for that first Hill visit. The group led by example: Here are our children, and they belong in their communities, they need quality health care and education, and they deserve to be heard by their legislators. 

Co-founders Michelle Morrison & Elena Hung pose with their families outside the Hart Senate Office Building [image description: Four adults and three children pose on the sidewalk in front of an office building sign. The building is made of white marble with large windows.]

The press quickly dubbed the family group, “the little lobbyists,” and the name stuck. Since 2017, Little Lobbyists has become a presence on Capitol Hill, providing an essential perspective on the ACA, Medicaid, Home and Community-Based Services, and many other issues. We have survived and thrived.

Little Lobbyists is now nearly 10K strong on Facebook, and followed by over 16K individuals and organizations on Twitter. Our work is reaching and empowering thousands of families every day. Through our state chapter groups and other outreach, we are also empowering and encouraging advocates at the state and local levels. 

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

In these troubled days of 2022, we stand with our allies to protect the bodily autonomy, self-determination, and well-being of everyone, and, particularly, women, people of color, LGBTQ+ individuals, and people with complex medical needs and disabilities.

The June 2022 U.S. Supreme Court decision to overturn Roe v. Wade dramatically limits the Fourteenth Amendment’s civil right to make personal decisions without government interference and upends previous rulings on personal rights including marriage, intimacy, sterilization, medical care, housing, speech, and more. People with disabilities have historically been denied the right to make these fundamental decisions about their own lives, and many are still contested.

Our goal is for the United States to become a place where our government champions policies and laws that protect the civil rights and the future of our children. We are working together to map a path to better health care, education, and community inclusion for every person with complex medical needs and disabilities.

Join us! Our voice is your voice, and your voice is ours.

Some of the Little Lobbyists in 2017 [image description: A group of 8 children, some standing and some in medical strollers pose on a large plaza with the U.S. Capitol building in the distance.]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Little Lobbyists family poses with their congressional representative.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Little Lobbyists speaking at a rally.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Little Lobbyists share their story in the Senate offices.

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

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

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

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

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

Little Lobbyists at a press conference.

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

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

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

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

Little Lobbyists visiting a Senate office.

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

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

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

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

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

Senator at the table with Little Lobbyists.

Congressman kneels to meet a Little Lobbyists child.

Little Lobbyists teen speakers before a rally.

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

Little Lobbyists on a holiday visit in a Senate office.

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

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

A Congressman listens to Little Lobbyists teens.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

L to R, Julie Beckett, Nora Wells (Exec Dir of Family Voices) and Elena Hung. [image description: Three women wearing professional clothing and wearing name tags pose at a conference.]

Little Lobbyists honors the passing of an advocate who changed our children’s lives: Julie Beckett, the mother of Katie Beckett, for whom a crucial Medicaid waiver is named. Julie and Katie Beckett became advocates for people with disabilities because they wanted justice and a good life for Katie and all disabled people. 

Julie wrote, “As many parents will attest, there sometimes comes a moment in parenting where you discover strength you didn’t know you had — all because your child needs you.” We at Little Lobbyists have felt that same call. 

Little Lobbyists Executive Director and Co-Founder Elena Hung knew Julie Beckett and was, understandably, awed:

“Julie always spoke about Katie as her partner in advocacy. The last time I saw her, I was struck by how many of her stories and memories were about ‘we’ and ‘us’ and ‘Katie and I.’ It was never just about Julie or Katie, but about the two of them together. It's something that really spoke to me as I feel the same way about Xiomara and why I am so adamant about describing Little Lobbyists as a ‘family-led’ organization and not ‘parent-led.’ In my opinion, I think this is a defining narrative of Julie's advocacy: fighting for justice with her daughter and not for her.”

Julie and Katie were founders of Family Voices, whose mission is to promote “partnership with families–including those of cultural, linguistic and geographic diversity—in order to improve healthcare services and policies for children.” Of Julie’s passion, Family Voices said, “May it inspire each of us to recognize the power of our voices to improve the world around us.”

Julie’s daughter Katie was born in Iowa in 1978. At the age of four months, Katie contracted viral encephalitis, which caused complex respiratory problems and partial paralysis. Katie needed a ventilator to breathe, and, according to Medicaid rules at that time, people who needed a ventilator could only be cared for in a hospital. Katie could not be cared for at home, where she belonged. Within our lifetime, disabled children were still automatically institutionalized.

For three long years, Julie fought the state and federal governments, seeking a way to bring Katie home, where she would be surrounded by love and where she would ultimately thrive.

Family Voices photo: Julie and Katie (as an infant) [image description: A black and white photo of a woman with long dark hair holding an infant who has a tracheostomy tube. Another woman, whose face is not visible, holds a toy out to the infant.]

Julie and Katie joined the same cause disabled activists had been working on for decades: the right to live in their communities with dignity and respect, and to live full and happy lives. When Medicaid was established in 1965 as part of the Social Security Act, the program guaranteed that people who needed 24/7 care, i.e., nursing-level care, could receive it in an institution or hospital with no waiting list. But no one had the right to receive care at home. 

Julie Beckett reached out to everyone she knew. She told Katie’s story over and over again. Because of Julie’s refusal to give up, in 1981 Katie’s story caught the attention of new president Ronald Reagan. The president saw the Beckett family’s plight as an issue of burdensome federal regulations. He also recognized what the disability community had been saying for many years: home care costs far less than institutional care. 

In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. Katie Beckett came home. Katie Beckett lived in her community until she passed away at the age of 34. 

Today, all 50 states have a “Katie Beckett waiver,” which allows eligible children to live with their families, in their communities with the health care and adaptive supports they need. This waiver saves state and federal governments hundreds of millions of dollars annually, but there are still 800,000 people on state waiting lists to receive home care. When you live at home, surrounded by your loved ones, your health outcomes are better–there are fewer costly hospital stays. Julie Beckett wrote, “This waiver meant so much for us and for Katie that I proudly display “waiver mom” in my email address to this day.”

But, as Julie and Katie knew, the rights of disabled people are constantly under attack. While Reagan recognized the value of home care, today’s Republicans have tried, time and again, to gut Medicaid and turn back time to the ugly days of institutionalization. 

Our work is not yet finished: To this day, neither states nor the federal government have made Home and Community-Based Services (HCBS) a right instead of a “waiver” or “demonstration” program. For how much longer do we need to “demonstrate” that our disabled loved ones, both children and adults, survive and thrive at home, where they belong? 

It’s been nearly 40 years since Congress created these essential waiver programs. President Biden’s Better Care Better Jobs Act would provide enough funding to reduce or eliminate agonizing waiting lists, raise home workers’ wages, and create more jobs. 

Julie and Katie Beckett knew they had helped to create change, but they also knew their work wasn’t finished. We all must fight on. “You are not required to complete the work of perfecting the world, but neither are you free to abandon it.” 

Jeneva Stone, Jamie Davis Smith, Elena Hung and Rob Stone [image description: Three women with light skin wearing dresses and one light-skinned man seated in his wheelchair pose on a beige pebbled sidewalk with the U.S. Capitol, flanked by green trees, in the background. Two of the women hold photo posters of their children, who are wearing Little Lobbyists t-shirts.]

On May 5, 2022, Little Lobbyists were part of a Home and Community-Based Services (HCBS) rally on the National Mall along with the Service Employees International Union (SEIU) to urge Congress to pass the Better Care Better Jobs Act (BCBJA). The BCBJA would provide badly needed funds to HCBS programs, reduce or eliminate waiting lists, enable states to raise wages for home care workers, and provide funds for better training. The BCBJA would create 500,000 new jobs and allow 1.1 million family caregivers to return to work. There are currently over 800,000 Americans on waiting lists for HCBS programs.

The Care Is Essential Day of Action on Capitol Hill featured many speakers with disabilities. Representative Debbie Dingell (D-MI) and Senator Bob Casey (D-PA), champions of the BCBJA in the House and Senate, gave speeches on the importance of home care. The full video can be viewed on the SEIU Facebook page.

Little Lobbyists members Jamie Davis Smith (mother of Claire) and Rob Stone delivered remarks at the event. Jamie gave hers by voice, and Rob used his eye-controlled assistive communication device to speak his. A transcript is below, along with a video clip of the event.

Rob Stone:

Home and Community-Based Services give me control of my own life. I can live where I want. My home care staff help me do the things I want to do. Like go to art classes and run my own art website.

I also take music classes. I play Challenger Baseball. And I’m an advocate with Little Lobbyists and The Arc of Maryland.

President Biden wants more money for HCBS so I can pay my employees a higher wage. And hire more staff. President Biden wants to end waiting lists.

I’m mad at Republicans because not one of them will help Joe Biden help people like me so we can live at home with dignity and independence. Home care now!

Jamie Davis Smith:

My name is Jamie Davis Smith. I wear a lot of hats as an attorney, writer and advocate but my most important job is to be a Mom to my four children.

One of my children, Claire, is 15. She loves being near water, amusement park rides, watching movies and eating an entire container of ice cream in one sitting. She has friends at school and loves going to parks with her siblings.

She loves doing all the things kids her age enjoy. But because she has complex medical needs and multiple disabilities she needs some help to do them. When Claire was younger, she did not have access to home and community-based supports and I had to give up not just my job, but my entire career to care for her.

Because Claire did, eventually, get access to home and community-based supports, she has been able to grow up where she belongs – at home with her family. She has been able to do things that would have been unimaginable without these supports, simple things like going to summer camp and playing at our neighborhood playground.

It wasn’t all that long ago that kids like Claire were forced to live in institutions, hospitals and even nursing homes. That’s inhumane.

Jeneva and Rob Stone [image description: A mother and son with light skin pose on a grassy area between two giant paintings. The mother is standing, the son is seated in his wheelchair. The painting on the left is a pair of hands in blue with the words "Care Is Essential" between them, with a round pink and gold background. There's a yellow flower to the right. The other, to the right, has a gold background with a red starburst in the middle. At the lower edge of the starburst are three fisted hands, raised. Around the starburst are the following words, in blue: Protect Us, Respect Us, Pay Us.]

Today I’m joining home care workers, seniors, and families across the country to urge Congress to pass the Better Care Better Jobs Act, which would provide badly needed funding for home and community-based services, raise home care wages, and create better jobs. It would also allow 1.1 million family caregivers to return to work. Currently, over 800,000 Americans are on state waiting lists due to lack of funding for Home and Community-Based Services.

Claire is just one of 61 million disabled Americans. We are speaking with one voice to say: Care can’t wait. We need action and we need it now.

Since Claire was born, all of my major decisions have been made with the singular goal of ensuring that she retains her access to home and community-based services. We have given up jobs and have had to live far away from family in order to keep Claire’s supports in place. We recently looked into moving again to access school programs for Claire’s siblings and to be closer to my parents, who are not well and require a lot of support as well.

What I discovered was that, if we moved to another state, Claire would be stuck on the bottom of a waitlist for at least seven years. This prospect was terrifying. If my family had to pay for the services Claire currently receives, it would cost us almost what we bring home every month.

I know of no other group of people in this country who have to endure a years’ long wait if they want to take a job or live closer to family or just want an adventure. We must invest in home care fully, and we must do it now.

And even though Claire has HCBS now, the shortage of home health care workers always looms over us. Claire’s home care workers are caring, hard working women. They want the best for her. But they work for low wages and do not get paid time off if they are sick or need vacations. Some lack reliable care for their own children. Some home health care workers stack multiple jobs together, working seven days a week, fifteen or more hours a day, just to make ends meet.  

Low wages make it hard to retain wonderful home care workers and makes it almost impossible to attract new caregivers. It means that disabled people lack the stability they need to thrive in their communities.

Anyone who says they support American families needs to take action, and they need to do it now. We need a big investment in home care.

Many of our leaders in Washington have heard us. They listen and they understand. But not one Republican, not a single one, will commit to take action towards ensuring that people with disabilities, like Claire, can access the care they need.

[image description: Two men and two women stand on a temporary stage with the U.S. Capitol in the background. A man seated in his wheelchair is looking at an AAC communication device, which is mounted on a pole connected to his wheelchair. One of the women holds a microphone near the communicator’s speaker. The other two persons stand behind them. To the left of the stage is an ASL interpreter wearing black clothes. She has light skin. To the right of the stage is a woman wearing a rainbow striped dress who has dark skin.]

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 Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate.

Rob Stone is a health care and disability rights advocate who lives in Bethesda, Maryland. He is also an artist.

Lisa Wesel at a Maine State House rally for I/DD services. [image description: A woman with light skin and curly grey hair holds a hand painted sign (white letters on black background) that reads “You Promised! LD967 To Support IDD Services.” The woman is also wearing black clothes and eyeglasses.]

I’m tired of begging for crumbs.

That’s what people with disabilities and their families do – we beg for scraps of funding from our state and federal governments. 

We shouldn’t have to. The Biden Administration is committed to increasing funding for Home and Community-Based Services (HCBS), crucial funding to eliminate state waiting lists, such as the one that my daughter Lidia is on in Maine. Congress is considering the Better Care Better Jobs Act (BCBJA) now, which would expand access to HCBS, enhance quality of life for disabled people and their families, and help create better home care jobs.

Lidia, who is just shy of 26 years old, has been baffling the “experts” for most of her life. “Don’t expect her to read,” they said, but she devours chapter books, especially Sherlock Holmes. She took a while to learn to walk, but today enjoys riding a bike. She loves jokes and wordplay and making art. 

Lidia has Dup15q, a rare genetic disorder that causes developmental disabilities and seizures. Like many diagnoses, it presents on a broad spectrum. While Lidia can do math in her head, she needs support to understand the value of money. She cannot safely cross a street by herself. She can accomplish many activities of daily living – showering, toothbrushing, cooking a simple meal – but she needs reminders to do them. .  Lidia also needs someone to manage her life-saving seizure medications. All of which is to say that Lidia could live in her own apartment with support from home care workers.

In Maine alone, there are nearly 2,000 people on the waitlist for the HCBS Medicaid  waiver that serves adults with intellectual and developmental disabilities and autism. That’s the waiver that would support my daughter and her peers in a home of their own, in a job, and in the community. The BCBJA would provide enough funding to eliminate waiting lists for those with disabilities. 

Maine’s waiting list, however long, doesn’t give a complete picture of critical needs – countless souls have come off the waitlist in name only, because there aren’t enough direct support professionals (DSPs) to assist them. Too many DSPs have been forced to leave the profession because their work has been underpaid and undervalued for so long. In Maine, wages are still low. Passing the BCBJA would allow states to raise wages.

A coalition of self-advocates, parents, and providers just went through a grueling state budget process, during which we tried to convince our governor, Janet Mills, that our children have value, and that they deserve to live full, safe, dignified lives. We made some headway – Governor Mills threw some money our way, and patted herself on the back for providing enough funding to support people who are deemed “Priority 1” on the waitlist – defined as people whose circumstances are so dire that they qualify for adult protective services. It is shameful that there even is a waitlist for people whose lives are at risk. 

Lisa with her daughter Anita. Lidia agreed to have her story told, but did not wish to have a photo posted of her. [A woman with light skin and curly grey hair, wearing eyeglasses and a vivid red wind jacket has her arm around a younger woman with light skin and brown hair drawn back into a ponytail. She wears a white jacket. The older woman holds a red t-shirt that says “Don’t lose the Right to Choose!” A note is pinned to it on which is handwritten, “This shirt is from my very first march on Washington 30 years ago. WHY ARE WE STILL HAVING THIS CONVERSATION?!?!?!?]

Governor Mills doesn’t like to talk about the people who are Priority 2 on the waitlist, a group the state seems to have forgotten. The Priority 2 waitlist, which will just keep growing as a result of this year’s budget, is for people “determined to be at risk for abuse” in the absence of HCBS services. Maine lawmakers have decided that it’s okay for people with disabilities to live at risk of abuse.

My daughter is “lucky.” She is deemed Priority 3, because her father and I are still able to care for her in the home where she grew up. It’s not the life that Lidia, as an adult, wants or deserves. But Maine has decided that providing her with a life of dignity is its very lowest priority, and Congress has yet to pass the HCBS funding increase the Biden Administration has requested.

After five years on the waitlist, Lidia continues to live in her childhood bedroom, while her father and I live in fear. We are one car accident, one serious illness, away from no longer being able to care for her. Then what would happen to her?

Increased federal funding for Home and Community Based-Services would go a long way toward solving that problem. But crumbs and table scraps won’t be enough. Congress: Please pass the Better Care Better Jobs Act now! Lidia’s future is at stake.

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Lisa Wesel of Bowdoinham, Maine, is the mother of two adult daughters. Her older daughter, Lidia, was born with a rare genetic condition called Dup15q, which causes intellectual disabilities and seizures. Lisa has been advocating for the rights of people with disabilities for more than 20 years. She serves on the board of directors of Community Connect Maine, a non-profit organization dedicated to connecting individuals, families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions.

Rob and his home care nurse, Justine, in the halls of the U.S. Capitol (pre-pandemic) {image description: A woman with dark skin and dark hair sits on a leather bench next to a young man with light skin and dark hair who is seated in his wheelchair. Behind them is a hallways with chandeliers and a mosaic tiled floor.]

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

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

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

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

But these Medicaid services need funding, right now, to help families like ours. We need everyone’s help to reach our legislators. The Biden Administration has made providing additional funds to HCBS programs a priority, but Congress has yet to act. In March, the U.S. Senate held hearings on the importance of home-based services, which will help family caregivers get back to work, as well as keep people with disabilities in their communities. The Better Care, Better Jobs Act would provide additional funds for HCBS, as well as increase wages for home care workers, help to create new jobs, and, most importantly, reduce waiting lists.

You can help by contacting your senator and letting them know it’s critical that they support the disability community and home care workers by passing the Better Care Better Jobs Act:

1. We need to reduce waiting lists for Medicaid waivers. 

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

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

Rob and his home nurse Ryan in Annapolis after testifying on behalf of a state disability bill [A man with light skin and dark hair gives a thumbs-up sign. He stands behind a young man with light skin who is seated in his wheelchair, covered by a bright green wheelchair cape. In the background is an old brick building with white doors and trim, over which fly the U.S. and Maryland State flags.]

2. We need wage increases for home health care workers and direct support professionals. 

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

 But how can our families hold onto staff, when Medicaid wages are so low? Nationwide, the median wage for home care workers is only $12 per hour. Many DSPs are paid less than a living wage. Home nurses and health aides often make more in hospital-type settings. Our children cannot survive and thrive without these extra sets of hands. And because about half of all home care workers rely on government benefits to make ends meet, putting more money into HCBS and raising wages would actually save government dollars.

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

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

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

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

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

HCBS is a work-in-progress, but we must build upon the vital work disability advocates done over the last 40 years. Tell your legislators to pass the Better Care Better Jobs Act now! Tell them your story, and help them understand how Home and Community-Based Services can benefit your family!

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

The Harmon Family [image description: A family of five dressed in colorful outdoor clothing poses with their tan dog on the banks of a large river. In the background are a scrim of evergreens and, behind them, enormous mountains.

I am the mother of three beautiful children. My first is an 8-year-old LEGO-lover who is sensitive and kind. You can usually find him reading or building something incredible on Minecraft. My second is a spunky 6-year-old who is the toughest kid I know, who tackles every challenge placed in front of him with a smile. He loves spending time with his family, going on walks, and doing anything to get a laugh out of his siblings. My third child is a confident and feisty 4-year-old. She’s an avid animal lover whose favorite thing is to play doctor/veterinarian. These three kids are each so unique and so deeply loved.

My hilarious and spunky middle child also has several disabilities. He spent the first eleven months of his life in the hospital, and has a history of chronic respiratory failure. He also has a tracheostomy and requires a ventilator to help him breathe. He had a stroke shortly after his second birthday, which puts him at risk of clotting issues. Our family embraces everything about each of my kids–including disability, which we view as just another part of life and parenthood! 

As you can imagine, my son’s health conditions put him at extremely high risk of developing serious complications were he to catch COVID-19. Also, my 4-year-old is not yet eligible to be vaccinated against COVID-19, leaving her at increased risk as well.

My family has been privileged to remain very isolated during the last two years so as to protect us all, but especially my high-risk son, from this novel virus. I am grateful for the decisions the Biden Administration has made to prioritize the health and safety of individuals with disabilities and those who are immune compromised. 

But the recent decision by a Florida judge to strike down the transportation mask mandate could have devastating consequences for my family. Please know that mask mandates on public transportation are indispensable to families like mine. The Justice Department plans to appeal the decision, and we hope it succeeds. 

Katie Harmon & her children [A mother with white skin and blond hair wearing a bright orange and grey striped sweater poses with two white boys and a white girl. The girl wears a red top and the boys light blue collared shirts. One boy has a tracheostomy & the other wears glasses. Behind them are window blinds.]

My husband works for an airline, and is supposed to return to work in-person soon. For the last two years, he’s been able to mostly work from home. Having to be at work around unmasked coworkers and travelers would put my whole family–but especially my high risk son and unvaccinated daughter–at great risk. 

Like any mother, I desperately want to protect all my children from harm; we know that COVID-19 often requires hospitalization, and can cause MIS-C, long COVID, and even death among children. While all children are at risk of developing life-threatening conditions as a result of COVID-19, this risk is heightened for children who are too young to be vaccinated and those with pre-existing health conditions.

People at high risk and their family members have a right to be able to attend school, to work, and to travel, just like everyone else. Requiring masks in public transportation settings is an important measure that can keep vital parts of the community safe and accessible for everyone. Nearly a million people have already died in the U.S. from COVID-19. Continuing to protect those at risk by maintaining basic public health protections during a pandemic is not a hardship, it is the bare minimum we must do to protect the health of our country.

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Katie Harmon is a mom of three in Wyoming, who works for a more inclusive, more accessible, and less ableist future for her kids.

Renzo Dougan Viscardi [image description: A man with light skin, dark curly hair, beard and mustache wears a grey hoodie. He poses in a living room, with four guitars of different styles mounted on a white wall behind him.]

Renzo is 38 and living what some might call an enviable life. Entering his home, you’d quickly realize his passion for the guitar; several are displayed on his wall. You’d also learn, from the memorabilia and the books on his shelves, that he has a thing for the Beatles, Bob Dylan, and the Grateful Dead. He landed his dream job at Martin Guitar nearly twenty years ago, so he knows many of the local musicians. 

Sometimes it seems that everyone in town knows Renzo. His warm smile draws people to him, whether he’s at the gym, the pool, horseback riding, taking classes at our community college, or fishing. His great sense of humor makes him a welcome guest at our neighborhood gatherings. Even the poll workers know him by name, as he shows up to vote at most elections.

Renzo has come a long way since surviving a sudden cardiac arrest with a subsequent anoxic brain injury at age 14. He had been participating in the Presidential Fitness Test during gym class. Renzo was medevaced to a specialty hospital an hour away, where he remained in a coma for the next month. The doctors told us he would likely remain in a "persistent vegetative state." How dehumanizing! The preferred medical term, since around 2010, has been “unresponsive wakefulness syndrome.”

Renzo’s father, Tony, was granted medical leave from his professorship, and I suspended work on my MFA. We stayed by Renzo’s side over the next three months, spent in three different hospitals. We taught him to breathe again without assistance, and his tracheal tube was removed before he was discharged home. Our dining room was transformed with a hospital bed and an array of medical equipment. Renzo could no longer walk, talk, eat, or control his bodily functions. 

Renzo and Cheryl [image description: A man and woman, both with light skin, wearing blue clothing, pose outside in front of a green hedge and a grey fence. The man is seated in a wheelchair and the woman is standing.]

At first, insurance provided only eight hours of nursing per night, ostensibly so Tony and I could sleep. We were left to attend to Renzo’s countless daily needs. It was physically and emotionally draining. We would not have survived, if not for our community who rallied to support our every need. They even delivered meals for the next year, allowing us time to focus on Renzo’s immediate needs.

When Tony returned to work, Renzo’s care became my full-time job. I struggled to make sense of the fragmented service systems our son’s future depended on. I was relieved to learn Renzo would receive school-based services, including physical, occupational, and speech therapies. These services made all the difference in Renzo’s recovery efforts. When he turned 21, he began receiving Home and Community-Based Services (HCBS) through Medicaid, which provide supports for his right to live in his community, which is less costly than living in an institution. 

Tony and I continue to help Renzo with as many of his needs as we can. His life-long security, however, depends upon Medicaid’s HCBS waivers, which pay for his Direct Support Professionals (DSPs). DSPs assist him round-the-clock with his medications, and with all activities of daily living. They learn the nuances of Renzo’s communication, his physical and emotional needs, and they help him communicate with his doctors, therapists, co-workers, and people in his community.

Renzo [image description: A closeup of a smiling man with light skin and dark curly hair. He sports a closely trimmed mustache and beard. He wears a grey shirt under a blue and white checked shirt.]

We were all devastated when one of Renzo’s most reliable and compassionate direct support workers told us he could no longer afford to work with him. He was making barely enough to rent a room in someone’s house and to make his car payments. When Renzo loses a valued DSP, his smile doesn’t come as easily, and his body language changes. Someone he viewed as a friend is suddenly gone, and he must entrust yet another stranger with his care.    

So many DSPs are being forced to leave this meaningful and essential work for higher-paid menial work in distribution warehouses, fast-food restaurants, etc. Who will be left to care for Renzo when we die?

Today, the median wage for home care workers nationwide is only $12 per hour. Over half of our nation’s DSPs rely on government-funded benefits, and most DSPs work two or three jobs in order to make ends meet. Among this workforce, 37% are uninsured and another 21% rely on public insurance like Medicaid. According to a study from the Economic Policy Institute, it would actually save taxpayer dollars were we to provide DSPs a living wage. DSPs are so much more than “caregivers;” they are a lifeline.

Our family has faced many fears and worked hard to assure Renzo’s quality of life, fulfillment of his potential, and his place in our community. We’ve learned much about resilience and the importance of government programs, not only as a safety net, but also as an investment in our citizens with disabilities and those who support them. It is imperative that our nation invests more state and federal funds in HCBS.

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Cheryl Dougan, a parent activist, has worked for change in the way people with disabilities are served since 1998. She is committed to the principles of Self-Determination and Person-Centered Thinking, both key to mapping a meaningful future for Renzo. Cheryl has served on the boards of several state and national disability related organizations, including the National Alliance for Direct Support Professionals, and is active in ongoing system transformation work with the Pennsylvania Office of Developmental Programs. She has presented at numerous state and national conferences. Cheryl lives in Bethlehem, PA with her husband Anthony Viscardi. Their son, Renzo, lives right around the corner in his own house, where he is supported by a remarkable team of Direct Support Professionals.

Renzo Dougan Viscardi is a creative individual with a broad range of interests including music of the sixties, art, and travel. He enjoys horseback riding, water activities, concerts, movies, children, good friends, strumming guitar, and Italy. Renzo did clerical work at Martin Guitar Company from 2002 until 2020, the beginning of Covid, and volunteered for fourteen years with the Easter Seals pre-school program. He received the 2004 Volunteer Center of the Lehigh Valley Award for Outstanding and Dedicated Service to the Community and the 2013 Vocational Achievement, presented by the Intellectual Disability Awareness Steering Committee of Lehigh & Northampton Counties. Renzo is an exhibiting artist working in mosaic, collage, and acrylic paint. Renzo served on the Northampton County MH/EI/DP Advisory Board (Nov 2010 to Jan 2013).

The Hatcher Family [image description: A mom and dad along with their two children, son and daughter, pose outside the U.S. Capitol building on a strip of green grass. The family is white. They are wearing outfits that feature the colors navy blue and white. The father and son wear glasses. The mother and daughter have long blond hair. They are accompanied by a large dog with white curly fur.]

In 2017, people with disabilities, including kids, showed up to defend the Affordable Care Act, the law that protects everyone’s access to healthcare. Defending that law, which gave our kids with complex medical needs and disabilities the right to access the health care they need to survive and thrive in their homes and communities, was the catalyst that brought the families of Little Lobbyists together. Five years later it finally feels safe to say that we succeeded.

Fun fact: the Little Lobbyists logo was designed late at night while we were waiting for the Senate vote that saved the ACA in the first year of the Trump Administration. 

I’m Simon’s mom, the designer of the Little Lobbyists logo and our Communications Director. Along with my husband, Brian (a.k.a. Simon’s dad), I run a small design firm outside of Baltimore, where we’re raising our two amazing kids. Our daughter Olivia is a freshman at Johns Hopkins, double-majoring in pre-med and public health (the family’s other business). Simon is almost 16, and he loves to play Mario Kart, practice the drums, and has the best laugh you’ve ever heard. Simon also has hydrocephalus, cerebral palsy, epilepsy, autism, vision and hearing loss, a unique genetic disorder, and physical and cognitive disabilities. 

You could say he has a few “pre-existing conditions.” 

In fact, everyone in my family has pre-existing conditions - from my husband’s high blood pressure to my asthma.  Olivia doesn’t even have a spleen! But that's a story for another time. 

My family needs health care, and we need the protections of the Affordable Care Act (ACA) to ensure we can access that health care. Simon recently became eligible for a Medicaid waiver thanks to the ACA’s Medicaid expansion. Having Home and Community-Based Services through Medicaid has been life-changing for him. 

Because Brian and I are small business owners, the only way the two of us and Olivia can access health insurance is through the ACA’s exchanges. Every year, during the open enrollment period, we choose the plan that works best for our family. Thanks to the ACA’s guaranteed coverage of essential benefits, the plans are all good quality. 

But I can’t say they’ve always been affordable. 

As middle-class business owners, my family has never qualified for any subsidies. Every month I put our insurance payment of over $700 on our credit card. Most months, I can pay it off. But sometimes – especially during the height of the pandemic when business came to a standstill – I couldn’t. Those months, we’d accrue debt with interest, and I’d accrue a bit more anxiety.

When Congress passed the American Rescue Plan (ARP) in April of 2021, I was absolutely thrilled that it did so much to improve our country’s access to health care. 

Laura Hatcher [image description: A black & white photo of a white woman with sunglasses posing in a park with the U.S. Capitol building behind her. She wears a long-sleeved dark-colored t-shirt with the words “Health Care Voter.”]

The ARP increased vital funding for Medicaid Home and Community-Based Services, created targeted subsidies to help people in Medicaid non-expansion states access health coverage for the first time, and opened a special enrollment period to help more families get health care during the pandemic. It also expanded subsidies for families, like mine, who had never before qualified for any support. 

My health insurance now costs $600 less a month. That’s $7,200 I didn’t have to put on my credit card this year. That is affordable insurance. That is access to the health care my family needs. That is peace of mind.

In fact, the ACA improvements under the ARP have worked so well that a record number of people signed up for health coverage in 2021. Millions more families can now see a doctor when they are sick. They can get preventative screenings to stay healthy. Access to health care means lives improved, lives saved.

Unfortunately, right now, this increased access to health care and peace of mind is only temporary. The enhanced ACA subsidies, Medicaid funding, and extended enrollment are due to expire at the end of 2022. Millions of people may also lose their health care when the State of Emergency ends and states are once again allowed to purge Medicaid rolls. 

We simply cannot let that happen. 

Maintaining the health care protections and coverage provided by the Affordable Care Act against 5 years of constant, intense, political assault was a Herculean feat, but it isn’t enough. 

The expanded access and affordability temporarily created by the American Rescue Plan isn’t enough, either. 

After five years of fear and instability created by Republican-led threats to our basic right to access to health care, and after two years  of a deadly global pandemic that disproportionately impacted marginalized communities (including people of color and those with disabilities),  it’s abundantly clear that our nation’s ability to survive, and hopefully thrive, is not possible without EVERYONE having access to health care. 

It is also clear that protecting and improving our access to health care is possible when we prioritize it, as we did just one year ago. 

A better, healthier future is within our reach – but we must once again show up to make that happen. Tell your legislators they must not allow us to go backward. Vote for candidates who will move our country forward.

The ACA was a start. Now it is time to finish the work. Health care is a human right.

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

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

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

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

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

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

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

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

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

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

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

Forward with hope,

Liz and Lauren

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

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

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

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

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

Here’s Peter Witzler’s assessment:

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

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

Peter:

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

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

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

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

Keir: 

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

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

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

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

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

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

Agata’s son enjoying time at the lake. [image description: In the lower right corner, a young boy sits with his back to the camera. He has light skin and short blondish hair. He is looking out over a lake surface that is rippled and dappled with sunlight. There is a branch with small green leaves in the lower left corner, and there are tiny water snakes in the middle of the photo.]

As the mother of a medically complex child, I was stunned by a recent Facebook post by a scientist friend who is cautiously advocating for dropping mask requirements in schools. He’s posted the recently released “Urgency to Normal” toolkit. My friend reminds us that he “was all-in at the beginning,” that he even got heckled at a school board meeting when he defended mask mandates. But, he says, he’s not sure he would push for school masking now. 

I’ve lived through the pandemic in Indiana, where many people refuse to wear “face diapers” and spread conspiracy theories about “plandemic,” horse dewormers, and microchipped vaccines. County councilmembers advocate against vaccines. Indiana’s vaccination rate hovers just over 53%. My county has a 47% rate. In Montgomery County, where I live, masking in schools seems to be the only mitigation tool we have, since our shops, restaurants, and churches are crowded and mostly unmasked and unvaccinated.

My scientist friend writes that Omicron is both more contagious and milder than previous variants. There’s only weak evidence for masking in school settings, he says. Everyone 5 and older has had a chance to get vaccinated, and the risks for younger kids are minimal, he says.

But what about children like mine? Those who are medically complex? Those who are disabled? Those too young to be vaccinated? What about the most vulnerable among us, the immunocompromised or those with comorbidities? Is masking properly in public places too much a sacrifice for the community as a whole to protect the most vulnerable during future Covid surges?  Scientists say Covid won’t be going away any time soon.

I am struck by the toolkit’s lack of consideration for people like my child. The name of the advocacy group itself, “Urgency to Normal,” has a eugenicist tone. I find the “healthy children don’t have to worry” rhetoric troublingly unconcerned with children who cannot rely on their own immune systems. The toolkit’s authors don’t seem to consider questions of equity in terms of disability.

I, myself, grapple with the implications of face coverings for children who have hearing impairment and those learning to read and speak. This is why I am advocating for nuance rather than rigidity or a one-size-fits-all approach to Covid. 

Agata in the classroom. [image description: A woman with light skin and short blond hair wears a black jumper over a teal long-sleeved shirt. She has a large orange scarf draped around her neck, and she wears large bronze-colored earrings. She is gesturing toward a large chalkboard in the background.]

Why not change masking requirements on a school-by-school or county-by-county basis when community spread reaches, say, a 10% threshold? According to the CDC, that’s a “medium” transmission rate. However, the CDC only recommends schools require masks when the transmission rate is “high,” which is a 20% transmission rate–and CDC rates are linked to hospital admissions and capacity. As we know by now, hospital admissions are not the earliest indicator of high community transmission rates. A “medium” transmission rate more accurately reflects high community spread. We also ought to consider wastewater testing and comprehensive school-based testing as  important triggers for mask requirements.

Many people are concerned about students who are learning to read, or teachers in classes with hearing-impaired students. Removing masks puts these students at risk during high transmission periods. Schools should invest in the many anti-fog, clear panel masks now available. 

We don’t have to follow rigid guidelines, but we need to take into account the safety and well-being of all students, including the large portion of them who are immunocompromised. Are deaths or the real threat of long Covid among young  children,  people with disabilities, and immunocompromised persons admissible collateral damage in this “Urgency to Normal” drive? Shouldn’t the toolkit’s authors wrestle with such complex issues, too?  

If more people were properly masked in public spaces, children and adults with disabilities could participate in society without fearing for their lives. Since this is not happening, let’s focus on safety in schools, one of the most essential places for our children to thrive.

Disability activists fought for a redefinition of “normal” even before the pandemic to make our society inclusive of those with impairment. It’s time we collectively address what “normal” means, whom it excludes, and why we’re ok excluding large groups of both vulnerable and valuable people from taking part in public life. 

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Agata Izabela Brewer is a Polish-American scholar, writer, teacher, and activist. She chairs Immigrant Allies, a branch of Humans United for Equality, a non-profit organization in Indiana. She is also a Court Appointed Special Advocate.

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

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

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

This is unacceptable, and it must stop.

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

Xiomara was born with serious medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all her nutrition, and a wheelchair to get around and explore the world around her.

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

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

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

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

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

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

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

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. 

Rob Stone (r) with his nurse Justine (l) in the U.S. Capitol Building after a press conference on health care. [image description: A young man with light skin is seated in his wheelchair. His wheelchair vest is decorated with advocacy pins. A woman with dark skin and black hair in a bun sits on a bench next to him. They are in a hallway of the U.S. Capitol building, the floor covered with decorative tiles in yellow, brown and blue. Decorative columns, chandeliers, and archways are in the background.]

What happens to disabled young adults after high school? Many families don’t know what to expect when school ends.

The Individuals with Disabilities Education Act (IDEA) makes education an entitlement for students with disabilities, ensuring them a place in their communities. However, families quickly learn as high school draws to a close that community living for adults with disabilities is not (yet) an entitlement or a guarantee. This critical period of decision making is known as “transition to adulthood,” or just “transition.”

While some disabled students go on to college or get a job, others, particularly students with developmental disabilities, transition from high school to state Home and Community-Based Services (HCBS) programs funded through Medicaid. Most states offer HCBS waivers through one of two models: one, “traditional providers,” (nonprofits or government agencies), or, two, “self-directed services.” In some states, self-directed services are known as “consumer-directed services.”

Traditional providers each offer their own custom blend of activities. Disabled youth must apply to each provider they’re interested in, and providers are free to reject any applicant, often without providing a reason. Many traditional providers will not consider applicants with complex medical needs, regardless of whether the applicant’s interests match those of the provider.  

Self-directed services has its roots in a belief generations of disability rights activists have shared: That disabled people have the basic human right to self-determination. Parent activists bucking society and raising their children at home also became part of what is known as the Independent Living movement of the 1970s, which began dismantling institutions and demanding community inclusion and self-determination for disabled people. Ed Roberts has become the most visible activist of this movement; however, his efforts built on those of many others. The Robert Wood Johnson Foundation was a pioneer in self-directed services as the first organization to provide grants for doing so. Self-direction is based on a belief that anyone can, with the right level of support, manage their own life. 

According to the national organization Applied Self-Direction, all 50 states have at least one HCBS waiver that can be self-directed, for a total of 260 programs and 1.2 million individuals served nationwide. In a traditional services model, activities and opportunities are determined by the agency, and the agency hires staff. In self-direction, the disabled individual sets up a Person-Centered Plan, which allows them to choose their own activities, plan their own days, decide where they’d like to live, and choose their own staff. 

SDAN’s video, “Self-Direction and the Good Life,” explains the core values of self-direction and the lives several of its members live. [image description: A young man with light skin and short brown hair smiles broadly. He is in a grocery store.]

When my son Rob transitioned, his complex medical needs excluded him from being considered by most traditional providers in Maryland, where we live. Furthermore, Rob had decided he wanted to be a writer, an artist, and an advocate, and no traditional providers offered him a chance to pursue all of those goals. Rob was thrilled to plan his own life through self-direction. 

Rob has become an enthusiastic member of Maryland’s Self-Directed Advocacy Network (SDAN), which believes that self-advocates and the families who love them—not bureaucrats and consultants—know, themselves, how to create their best lives. Flexibility and choice are SDAN’s guiding principles as it strives to protect its members, and SDAN’s legislative champions in Maryland’s General Assembly have recently introduced legislation in the House and Senate to protect the interests of self-directed participants like Rob. 

From 2011 to 2019, self-directed participation increased over 16%, according to an AARP report. During the pandemic, those numbers have only risen. Because of this enthusiasm, many states are struggling to “rebalance” their Long-term Supports and Services (LTSS), of which HCBS waivers are one part. 

States must consult often with the Centers for Medicare and Medicaid Services (CMS), review their waiver language, and, sometimes, revise regulations and budgets. Because institutions and nursing homes haven’t gone away, and traditional providers are often struggling to make their own programs more flexible and community-based, there are lots of voices clamoring to be heard in state government deliberations.

To ensure that our school-aged children have good options for living their best lives as adults, people with disabilities and their families must join those voices clamoring to be heard! There is life after high school, and we all must advocate and fight for the tools and programs that will turn dreams into realities.  

As our blog explores transition issues and opportunities, we will, going forward, present information on as many options as possible. 

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer. If you’d like to write a blog post for Little Lobbyists contact Jeneva!

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. 

Brian’s brother, Dan. [image description: A man with light skin and close-cropped dark hair wears a white and orange football jersey. He is seated in a wheelchair that is decorated with orange crepe paper. He’s smiling. A shelf filled with house plants is behind him.]

Danny loved to tease me. I was his younger brother by four minutes, a fact he never let me forget. If you asked him, “Danny, who’s ugly?,” without fail he’d yell “I-an!”-- his version of my name. When I sang to him, he heckled me with a long blasted “Ahhhhh!” drowning out whatever melody I had. 

Danny had cerebral palsy and intellectual disabilities. He lived at home with us until he was 24, until my mother did not have enough help to provide the 24/7 care he needed. 

If Danny had had access to the level of Home and Community-Based Services (HCBS) that President Biden has proposed in The Build Back Better Act, he could have continued living at home, where he belonged.  

In 2005, when we were 22 years old, I worked as Danny’s home health aide before I left to teach English in China. I cherished those hours with my brother, falling into the rhythm of his needs. I loved pushing him through the mall, where I’d give him wheelies down the department store aisles. I loved taking him for ice cream, spooning him bite after bite and hearing him say, “More.” I loved taking him to the movies, where he’d crack up at all the dirty jokes he wasn’t supposed to “get.” I’d spent four years in college but here was another body of knowledge: how to help him brush his teeth hand-over-hand, how to position him for bed with a pillow under every stress point, how to translate what he meant by reading the tone of his 12 words and physical expressions. He made me feel more useful than I’d ever felt in a classroom.  

I started working for Danny because my mother had difficulty finding help, due to a lack of Home and Community-Based Services in Ohio, where we lived. My mother provided Danny’s care by herself for the first 18 years of his life. When Danny qualified for Supplemental Security Income (SSI), Ohio only approved help for showering and feeding, about 17 hours per week. Often, the aides wouldn’t show up. I wasn’t sure how my mother would manage after I left for China. I thought about canceling my overseas plan. 

But she told me not to worry: “You need to have your adventure.” Getting on that plane was one of the hardest things I’ve ever done.

In China, over the phone, my mother told me that Danny wasn’t doing so well. The aides often didn’t show up, and the ones who did often seemed disinterested. For one guy, she timed it: 40 minutes before he said one word to my brother. 

Then my brother’s swallow reflex failed and he got a feeding tube, which required a whole new level of care. There were not many home health care workers who could handle his feeding tube. Four months later, my mother reached her breaking point and made the difficult choice to transfer him to a group home. 

From left to right, Danny, their mother, Brian. [image description: Two young boys in matching striped shirts wear cone-shaped party hats. One is seated in an adapted high chair, the other stands next to him. Their mother wears a pink sweater and poses between them, holding out a cupcake with four lit candles.]

I returned from China just after he moved. It killed me that I wasn’t there to help with his transition. One night, he came home and was his normal happy teasing self until it was time to go back. In the kitchen, as it grew late, he sensed it: he got stiff and his neck strained against his head rest. 

I asked him, “What are you mad about, Dan?”

“Mama,” he said and then yelled. He knew he was going back. My mother stood in the kitchen, doing the dishes, trying not to cry.

I said, “Danny, listen. We have to grow up. We can’t live with Mom and Dad forever. We have to move out and get our own places. Our sister had to do it. I had to do it. You have to get your own place now, too. Dan, we are still a family.”

From that day forward, Danny seemed to accept his new home. He let me help him through his transition, and I was proud I could finally be there for him. But in retrospect, when Danny yelled at my mother that day, he was right: he should’ve been allowed to live at home. Although he handled his transition with grace and maturity, he wanted to live with his family. But the lack of long-term Home and Community-Based Services made his transition inevitable. 

At the group home, he was exposed to neglect: after an aide failed to check on him, he fell out of his bed. He did not feel safe. Danny died in 2011, due to complications of pneumonia and a medical mistake.

If Danny had had access to the level of HCBS that President Biden proposed investing in, and that the House passed as part of the Build Back Better Act, he could have continued living at home, where he belonged. The Build Back Better Act would increase the care workforce by creating better jobs for home health care workers: raising wages and providing better training. It would create thousands of new jobs and allow millions of unpaid caregivers to get the support they need. It would save lives.

My twin brother passed away in 2011 but I still have his messages on my phone, when he called to make fun of me. “I-an!,” I still listen to him say. Danny deserved better. People like my brother should be able to stay at home, where they can tease their little brothers and be with the family they love. We need the Senate to fulfill President Biden’s promise to our families and finally pass the Build Back Better Act.            

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Brian Trapp is a fiction and creative nonfiction writer. He teaches creative writing and disability studies at the University of Oregon and is currently a Steinbeck Fellow at San Jose State University. He is at work on a novel and a memoir, both based on life with his twin brother, Danny. If you’d like to read more about Dan, check out "Twelve Words" and "You Robbie, You Baka," both available online. Follow Brian on Twitter at @btrapperkeeper.

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

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

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

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

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

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

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

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

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

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

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

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

Sara Bean Staggs (l) & Emma Staggs (r) [image description: Two young girls with light skin and blonde hair stand against green bushes. They are each wearing “Future Health Care Voter” t-shirts and blue jeans.]

When students were sent home from classrooms in March 2020, our public education workforce burned the midnight oil to execute a monumental set of tasks. While the outcomes varied by state and district, there was a feeling of community pulling together through the noise, uncertainty, and fear in the early days of the pandemic. We called educators and health care professionals heroes! We clapped in unison, sent meals, and heaped much deserved praise on our public education workforce.

Twenty-two months later, we’re crumbling under another surge of the COVID-19  public health crisis, and many schools are being forced to close again. Other schools are remaining open, but without the appropriate strategies in place to keep kids and staff safe, preventing more vulnerable kids from being able to access education and further contributing to the pandemic’s surge. After so much time has passed it feels like we are no better off than we were at the start of the pandemic and no one knows where to go from here.. 

Like millions of students across the country, Little Lobbyists Emma and Sara Bean (my twin daughters) will begin their 5th semester of virtual learning. Time after time, I have circled dates on our calendar with the hopeful expectation of safely returning to the classroom, only to cross them out and hope for a date in the future.

Just last week, U.S. Secretary of Education Miguel Cardona spoke with CBSN about the importance of in-person learning and highlighted a number of recommendations that have yet to be implemented at the district-level, while saying he supports “safely reopening” classrooms. I wonder if he and his team are aware of the barriers to testing supplies, universal masking, and high rates of eligible adults and children who remain unvaccinated? Although Congress allocated funds to help schools become COVID-safe in the American Rescue Plan, the reality is that most schools have not yet achieved these basic goals.

As my friend Megan Carmilani, founder of Long COVID Families noted, “Saying, ‘We need to keep schools open,’ is not a plan to keep schools open.” When do we stop talking and start listening to those on the front lines? 

Sara Bean Staggs participating in remote learning. [image description: A young girl with light skin and blonde hair sits at a beige cushion. She is pointing to images on an iPad that depict math problems.]

We need to listen to our educators. In my district, teachers want increased community support, Covid-safe working environments, increased pay that matches their abilities and credentials, and to be a valued voice in decision-making. 

We need the Administration to recognize that schools are not yet safe, especially for our most vulnerable students, and to support flexible options and accommodations, including high-quality virtual programs. 

We need every school to implement what we know works to control Covid-19 in our classrooms, including consistent and appropriate universal masking (with access to high filtration masks for all), improved ventilation in school buildings across the country, required vaccinations for all those eligible, and a return of paid Covid-19 sick leave for caregivers.

How many lives lost or changed are we willing to endure before we turn toward actionable solutions? Pick a number, because we’re likely to reach it before the smoke clears. The pandemic isn’t over just because we’re tired of it. We need to come together once again to reimagine and reshape our public education to be more inclusive, flexible, multifaceted, and adaptable to shifting realities.

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Stacy Staggs is the Director of Community Engagement for Little Lobbyists.

#1 Vaccines!

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

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

#2 Virtual Meetings, Real Advocacy!

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

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

#3 Congressional Testimony!

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

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

#4 Celebrating the Americans with Disabilities Act!

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

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

#5 Meeting with the Vice President!

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

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

#6 Care Can’t Wait!

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

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

#7 Powerful Partnerships!

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

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

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

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

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

#9 The Build Back Better Act passed the House!

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

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

#10 Little Lobbyists are invited to the White House!

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

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

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

Wishing everyone a happy and healthy 2022!