Little Lobbyists families outside Union Station before the rally. We are wearing our blue logo shirts with our name in white letters and the graphics of a child touching a shooting star, heart with an EKG line, and the American flag. Union Station’s gray granite walls and decorative pillars and light sconces are behind us. We are using a variety of mobility devices.

“The work you do matters. You are there for families when they need you most — providing comfort, strength, and compassion that inspire us all. Your devotion to the people and communities you serve represents the best of America’s character, and we will always stand with you, ensuring you are seen, valued, and rewarded fairly for the work you do.”

– President Joe Biden, Proclamation on Care Workers Recognition Month 

The White House proclaimed April National Care Workers Recognition Month. To celebrate, Little Lobbyists joined the Care Coalition for a week of events highlighting why Care Can’t Wait! It was an awesome week, and our Little Lobbyists families turned out to participate in every event:

• Rally for Care: The leaders of the Care Coalition, including Little Lobbyists’ Executive Director Elena Hung, made the case for care: “...support care champions who fight for HCBS, care champions who fight for our disabled children. Ask your friends and family to join us. We can do this. We have done it before, and we can do it again!” President Biden joined us, giving a rousing speech re-confirming his support, “Care workers represent the best of who we are in America. We look out for one another in America. We leave nobody behind.” 

• Congressional Town Hall on Care: Lawmakers, union representatives and the acting Secretary of Labor met with advocates and took questions. Little Lobbyists mom Jeneva Stone asked Senator Elizabeth Warren what she would say to those who tell us we can’t afford home care. Senator Warren gave a passionate response in which she emphasized that caregiving is part of our country’s infrastructure. She began by giving a  shout-out to our Little Lobbyists families, “who are there in every fight!”

• White House Care Convening: Key members of the Administration, including Secretary of Health & Human Services Xavier Becerra and the Director of the Domestic Policy Council Neera Tanden, detailed steps the Biden Administration has already taken to build a robust care infrastructure, and emphasized their commitment to do more. The leaders were joined by a diverse panel of caregivers and recipients, including an AAC user and family caregiver, who attested to the urgency of our nation’s worsening care crisis.

Care Can’t Wait is a national coalition committed to building a 21st century care infrastructure, including investments to expand access to childcare, paid family and medical leave, and home-and community-based services, and to ensure good jobs for the care workforce. Care Can’t Wait believes that “care is at the center of our families, communities, and economy.”

Little Lobbyists is a part of the Care Coalition, shining a spotlight on the needs of our kids: access to community-based long-term services and supports that keep our children in their homes and communities, where they belong; making policymakers aware that our kids with complex medical needs & disabilities require licensed and fairly compensated care workers,  including home nurses and other home care and direct support professionals; and advocating for the home care needs of disabled adults, because we want our disabled children to survive and THRIVE into adulthood. 

Enjoy this slideshow of our families in action! Visit our website! Follow us on social media (@LittleLobbyists on Facebook, Instagram, X, and Threads) and join our Facebook community page! Better yet, become part of our movement by sharing your child’s story with us!

Image descriptions will appear as the cursor hovers over the photo.

Isra'El & Rico pose outside Union Station. They wear gray suit jackets with LL pins on the lapel and LL t-shirts underneath. Both have close-cropped, tightly curled dark hair. Rico has a mustache.

Laura, who has long hair and sunglasses pushed up on top of her head, smiles outside Union Station. Kody is to her right.

Laura and Elena pose outside the station. Laura has a large red bag over her shoulder. Elena has bright magenta streaks in her dark hair.

Simon stands using his walker and points to something in the distance. Rob, who sits in his wheelchair, is to the left.

Kody, rolling along in his wheelchair, gives a thumbs-up as our group is escorted into the rally. Jeneva and Rob are behind him. Rob’s Medicaid nurse Ryan pushes his wheelchair.

Megan holds her son Gabe in her lap inside the rally. Both are wearing N95 masks and they are seated alongside a beautiful marble wall in earth tones.

Rob, wearing his light blue wheelchair cape and a matching LL baseball hat, smiles as he waits for the rally to begin.

Rico and Isra’El pose with Gabe in-between them. They are smiling.

Stephanie and Rob pose in their wheelchairs inside the ADA section at the rally.

Elena and her son Khalil wave from behind a metal barrier just outside the ADA section. Khalil is wearing an N95 mask.

Simon, wearing his headphones and glasses, gives the camera a knowing and pensive look as he waits for the rally to begin.

Danielle, who has elaborate cornrows and is wearing her Little Lobbyists royal blue shirt (as are all our members), holds her toddler daughter Destiny. They are looking at each other and smiling.

Destiny raises her arms high in joy. Behind her is the stage with a row of American flags.

Dan and his daughter Claire are seated at the rally, talking to Jeneva, who wears an off-white coat and has her back to the camera.

Elena speaks from the stage at the rally. To each side of her are other speakers.

President Biden walks toward a group of caregivers to the right. They hold signs expressing support for care. Among them is Jamie, who has long, dark curly hair. Behind them is a large sign on the stage, royal blue with white lettering: Care Can’t Wait.

Gabe and Destiny pose in front of the stage, which is all in blue and white with American flags.

A group of us pose in front of the stage—some are using mobility devices, some are standing, some are kneeling on the floor.

Laura and Jeneva pose on either side of Rob, who is smiling broadly from his wheelchair and wearing his LL baseball hat and his Clark-Kent-style glasses.

Megan and her young son Gabe pose in front of the stage.

Rico and Isra’El pose in front of the stage, looking sharp and serious!

Jamie, her daughter Claire (who uses an adapted stroller) and son Ben pose in front of the stage, with Izzy, a careworker for the late Day Barkan.

Another group of Little Lobbyists families poses in front of the stage, some standing, some using mobility devices. Danielle’s daughter Autumn holds a sign that says “Care Can’t Wait.”

At the Congressional Town Hall, Rob smiles at Destiny, who is being held in Danielle’s arms. Destiny is giving Rob the once-over. They are in a large conference room with banks of rectangular overhead lights.

Senator Bernie Sanders, wearing a suit and with his trademark wild white hair, speaks energetically into a microphone at the Town Hall to a tightly packed audience who sit on folding chairs.

Jeneva holds a microphone, with Rob next to her in his wheelchair, in 3/4 view of their backs. She is asking a question of Senator Elizabeth Warren, who wears a red suit jacket and is seated next to Senator Bob Casey and the host Sarah Jones.

Our Little Lobbyists families pose in front of the Town Hall backdrop, white with the blue logo of the Care Coalition and various slogans about care. Rob is posed in his wheelchair at the front. From l to r: Danielle holding Destiny, Daya, Elena, Jeneva, Val, Aire.

Rob poses solo in front of the Town Hall backdrop. He is smiling and holding the grip switches for his communication device.

Secretary of Health and Human Services, Xavier Becerra speaks from a podium in an elaborately decorated 19th century meeting room in the Old Executive Office Building, which is adjacent to the White House. Behind him is a large bronze wall decoration framed in ochre marble that features an angel holding tablets above a large shell, and a set of old-fashioned globe-style lamps above everything.

Rob poses in-between advocates Carson Covey (a fellow wheelchair- and AAC-user) and Carson’s sister Brynne. Behind them are two American flags flanking a decorative bronze doorway.

Rob and Jeneva pose outside the White House, under a white arrival canopy with the presidential seal.

Grace (l) with her sister (r) at Thanksgiving dinner..

The current bipartisan deal sets spending caps on essential and already underfunded programs, including Medicaid and education for kids with disabilities, that impact millions of Americans – including our Little Lobbyists families. As the budget process moves forward, here’s what’s at stake for Grace Dow:

I am a writer and disability advocate who has cerebral palsy. On my blog, I share personal stories as well as information about various disability rights issues. In the future I hope to become a published author. In my spare time, I enjoy reading, watching movies and following the Boston Red Sox and Pittsburgh Penguins.

I have Cerebral Palsy and I was born prematurely in India. I rely on a walker and a wheelchair for my mobility. Currently, I have private health insurance and Medicaid. Medicaid provides coverage for home and community-based services. Home and community-based services have allowed me to live in my own apartment since 2020. This was a dream come true for me. I am able to be an active member of my community because of Medicaid. I enjoy going to the movies, the grocery store, sports games, and traveling. None of this would be possible without Medicaid. Without Medicaid I would rely on my parents to provide all of the care I need or risk being forced into a long-term care facility.

While we’re grateful the Biden Administration successfully protected Medicaid from being cut, it is already deeply underfunded. At least a million people are already on waiting lists for Home and Community-Based Services (HCBS), medical costs continue to rise, and care for our families could be compromised. How would that affect you?

Grace bending down to touch a dolphin at an aquarium.

Medicaid cuts would be devastating to me. Without Medicaid, life as I know would be gone. I would lose my PCA (personal care assistant) services. Additionally, I would have to move back home with my parents. I would rely on them to provide all of the care I need or risk being forced into a long-term care facility.

The Individuals with Disabilities Education Act (IDEA) has NEVER been fully funded. Currently, the Federal government pays only 16% of IDEA costs. Capping spending at less than the rate of inflation will mean fewer special education teachers and inclusion personnel in already struggling classrooms. How would that have affected you when you were younger? And how will that affect children today?

IDEA allowed me to attend public school. I loved school and had wonderful teachers. I was fortunate to have a wonderful paraprofessional whom I worked with for a decade. Without IDEA, I wouldn’t have received the support I needed at school. I was able to go on field trips, and participate in all kinds of activities in the classroom.

Republicans claim capping spending is necessary to cover the U.S. deficit, but that’s just not true. House Republicans have  introduced legislation to make permanent the “Trump tax cuts” that will cost the U.S. $1.7 trillion by the end of this year. 

Our kids with disabilities shouldn’t be asked to cover the U.S. debt to pay for the cost of tax cuts to the ultra rich. We can’t let that happen.

Photo Credit: Official White House photo by Pete Souza. [image description: Lois Curtis (center) presents President Barak Obama (r) with one of her paintings. To the left of Lois is her direct support professional. They are in the Oval Office.]

On June 22, 1999, when the U.S. Supreme Court issued its landmark disability rights decision in the case of Olmstead vs. L.C. & E.W., my family was at the beginning of our own disability rights journey. My son Rob had just turned two, and we were struggling with “all the things”: health insurance, durable medical equipment, impending surgery, and, most importantly, how to keep Rob in his community. 

Had Rob been born 15 years earlier, he would have been automatically institutionalized. Rob and my family owe a huge debt of gratitude to Lois Curtis, the “L.C.” in the Olmstead case. 

Lois Curtis, a disabled activist and artist, passed away on November 3, 2022, at the age of 55. It was Lois who was the driving force behind the Olmstead litigation. Ironically, the case is perpetually referred to by the name of the Georgia Commissioner, Tommy Olmstead, who opposed community living rights for disabled people, a reference that threatens to erase Lois Curtis from our collective memories.

Lois and Elaine Wilson (“E.W.”) were both subjected to the horrors of institutionalization. Both women were locked in state facilities due to their developmental and mental health disabilities. Lois was determined to get out. Angela Weddle, a disabled artist who has been featured on our blog, reports that Lois said of her unjust isolation and segregation, “I prayed to God. I cried at night so I prayed to God every night in my bed.”

Disabled people have been fighting for their community living rights throughout U.S. history, for the right to stay out of institutions and “asylums.” Medicaid itself did not allow in-home care until 1983 when Katie Beckett’s situation caused Congress to finally establish the first Home and Community-Based Services (HCBS) waiver. The Americans with Disabilities Act (ADA) of 1990 established community living rights, but these were difficult to enforce until Lois Curtis sued the State of Georgia for her freedom to live where she chose, and to compel the State of Georgia to provide her with appropriate HCBS supports.

Lois repeatedly contacted the Atlanta Legal Aid Society to ask for their help, and in 1995, it agreed to take her case, which took four years of effort to reach the Supreme Court. In 1999, the Supreme Court sided with Lois, a decision which put more muscle behind the ADA and the imperative to provide HCBS. The Court said that “people with disabilities like Lois and Elaine have the right to receive the treatment they need[ed] in an integrated setting if that is what they want, if their doctors agree, and if it doesn’t fundamentally change how the state provides services to people with disabilities.”

According to all accounts of her life, Lois Curtis thrived outside of the institutions that had once oppressed her. Lois Curtis was a trailblazer in many ways. Angela Weddle discusses Lois’ passion for art, and her talent for portraiture. You can see some of Lois’ art here. Sara Luterman reports on what Lois’ legacy means for disabled people of color, especially Black disabled women. Luterman also notes the intra-disability bias against those with intellectual and/or mental health disabilities, quoting activist Finn Gardiner, “There’s a divide in the disability community between people with physical disabilities and people with disabilities that affect their cognition or their mental health.” Lois Curtis secured rights for all disabled people, not just some. 

In his tribute to Lois Curtis, disability activist Mike Erwin writes, “Curtis was asked what her wish was for all the people her determined action has helped move out of institutions. ‘I hope they live long lives and have their own place,’ she said. ‘I hope they make money. I hope they learn every day. I hope they meet new people, celebrate their birthdays, write letters, clean up, go to friends’ houses and drink coffee. I hope they have a good breakfast every day, call people on the phone, feel safe.’”

My son Rob, who has developmental disabilities, is now 25. When Rob transitioned from high school, he decided his life goals were to be an artist and an advocate, the path of Lois Curtis. While Rob still faces challenges to community living due to his complex medical needs, he is, nonetheless, surviving and thriving. Rob’s quality of life is a gift from Lois Curtis. 

Rest in power, dear Lois.

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Jeneva and Rob Stone are members of Little Lobbyists. Jeneva is the Little Lobbyists Blog Manager.

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. 

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.

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.

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).

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!

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.

Daniel (center) with his sister Melody (left) and his mother Carolyn (right) at Melody’s wedding. [image description: A wedding photo depicting a bride with light skin and long, curly blonde hair wearing a white lace gown and veil stands at the left of a young man seated in his wheelchair. The young man has light skin, short dark hair, and has glasses. He wears a navy blue bow tie and white dress shirt. To the right stands his mother, a woman with light skin and dark brown hair in an up-do, who wears a navy blue, off-the-shoulder gown. She also wears glasses and a wrist corsage of white roses. The party is posed under a trellis arch of white roses and green leaves, with the ocean in the background.]

In the spring of 2010, I headed to the zoo for my son Daniel’s annual school field trip. I loved spending the day with other parents of children with disabilities. The comradery fed my soul. This was the last trip of his elementary school years in our home state of Florida.

Daniel is now a 22-year-old man. He’s a happy guy who loves to drum, swim, and listen to music. He was born in 1998 with a rare genetic disability that affects him physically and intellectually. It wasn’t officially diagnosed until he was 21 years old, thanks to the increased availability of genetic testing. A random deletion on one of Daniel’s calcium channel genes results in a severe seizure disorder and global developmental delay. 

After cruising past the giraffes and elephants, we took a break for lunch. Wheelchairs rolled in, some with IV poles attached for midday g-tube feedings. Pureed lunches were pulled from backpacks for those able to eat by mouth. I could relax knowing there were others who understand my struggles as well as my deep love for my son. Among them was the unfamiliar face of a mother and child new to our school. 

The new mom had recently moved to Florida from Wisconsin. My first suggestion, as it often is, was to contact the Agency for Persons with Disabilities to enroll in the Home and Community-Based Services (HCBS) Medicaid waiver program. Daniel had been on the waitlist for eight years, one of 20,000 Floridians waiting for services that provide respite, personal care assistance, and help with the extra costs of raising a child with disabilities or caring for an elderly relative. Today, there are 72,000 Floridians on HCBS waiting lists. 

“Oh, we’re already on the waiver,” the transplanted Floridian explained. 

“What? Daniel was born here, and we’ve been on the waitlist for years. I have written so many letters to my representatives, helped with state-wide petitions, and made more calls than I can count. HOW did you get on the waiver already?” 

She looked a little embarrassed. I have her to thank for opening my eyes, though.

“Well, my ex-husband has back problems. Not severe, but bad enough that we were able to get crisis services when we documented his chronic pain,” she told me.

I suffer from back pain due to repetitive lifting of Daniel. My back problems were compounded by a car accident. It turns out that a caregiver’s chronic pain moves a child’s status higher on the waiting list in Florida. So, I filed the appropriate paperwork. Several months later, we had some help.

Why do people with disabilities  and their parents have to jump through so many hoops to access the funds that keep them at home and in the community where they thrive? The answer is chronic underfunding, which is why the Better Care Better Jobs Act (BCBJA) is so important. The BCBJA would eliminate state waitlists, increase pay for home care workers, and create good jobs with appropriate training in home health care. In Florida alone, 5,000 new jobs would be created. In addition, 10,100 family caregivers in Florida would be able to return to work themselves. 

Once enrolled in Florida’s HCBS system, we could hire personal care attendants to dress and feed Daniel in the morning and get him on his school bus, so that I could be at my job on time. The downside was significant turnover at the agency I used, and his care was not consistent or high quality. I cringe when I remember travelling out of state to be with my mother as she was dying, and Daniel’s assistant left him unattended, resulting in a fall and the loss of a permanent front tooth. 

Low pay for home care workers meant I couldn’t always rest easily when Daniel was in their care. In Florida, there’s a consumer-directed option (also known as “self-directed” services) that allows me to hire friends, family, or my own hand-picked assistants. After Daniel’s fall and injury, I moved us into that option. 

Florida has a base pay rate of $12 an hour for home health care workers, which is not a living wage. I am able to increase it as our budget allows, but a few dollars more is not enough incentive for the type of caregiver Daniel needs. Plus, increasing hourly pay reduces the number of total hours available to us. As a result, home health care work is not sustainable for those who need employee benefits such as health care and paid time off, a huge barrier to assembling a quality team. I have been lucky to find a few fine people who take good care of my son, but they are the exception, not the rule.  

The HCBS programs, nationwide, are in need of crucial improvement. I am pained that so many in my community are still waiting to be added to this critical waiver, or, like me, are having difficulty finding care providers they can trust. There is an urgent need for the Better Care Better Jobs Act to be passed to create jobs, raise wages for direct care workers, and eliminate HCBS waiting lists. 

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Carolyn Murray is a retired registered nurse currently caring full-time for her son Daniel, who has complex medical needs and disabilities. She is also a writer for professional nursing journals and other publications. Carolyn works closely with her former husband, Tom Murray, to provide a meaningful life for Daniel. Her daughter Melody and son-in-law Andrew live nearby in Jacksonville, Florida.

Rob Stone and his parents at a Care Coalition rally on the National Mall. [image description: A young man with light skin is seated in a wheelchair. He wears sunglasses and a surgical mask over his tracheostomy; he wears a “Caregiving Is Infrastructure” t-shirt. His parents, light-skinned persons each wearing “Caregiving Is Infrastructure” t-shirts, stand behind me. Behind the group is a large teal fabric sign that says, “#CareCantWait / Time to Deliver / Jobs. / Home Care. / Justice.” The family is standing on a grassy area of the National Mall, near a large reflecting pool in front of the U.S. Capitol Building.]

In 1981, President Ronald Reagan learned about a 3-year-old girl with complex medical needs and disabilities named Katie, who was forced to live in an institution because federal rules governing Medicaid prevented her from getting the care she needed at home. President Reagan knew this was wrong, so he created the Medicaid waiver program, allowing states to "waive" Medicaid's institutional bias for people with disabilities, like Katie, who wanted to get the care they needed in their own homes and communities. 

This right to what we now call Home and Community-Based Services (HCBS) was later affirmed by the U.S. Supreme Court's Olmstead decision in 1999. But, 40 years after President Reagan brought Katie home to her parents, and 22 years after the Supreme Court declared that segregating people with disabilities in institutions violated civil rights, Medicaid rules are still forcing people to live in institutions in order to get the care they need to survive. 

Why is it so hard for Congress to allow people with disabilities the freedom to live in their own homes and communities? Medicaid has been a life-saving program, but it has one major flaw that disability activists have been trying to correct for decades: Medicaid’s “institutional bias.” 

When I originally sought Medicaid services for my disabled son Rob in the early 2000s, I just assumed that my son could be cared for at home. I mean, that’s where people belong, right? I didn’t understand what requirements were “waived” by the HCBS programs. Medicaid generally serves people, disabled and nondisabled, with incomes that are close to or below the federal poverty threshold. Was it that Rob was a dependent disabled child that made him eligible? Was it our income, which was well above the federal poverty level, that was being waived? I knew that Rob, himself, could only have $2,000 or less in assets at any time in order to qualify. 

All of the above is part of what qualifies people for Home and Community-Based Services programs. But none of these are the main restriction that’s being “waived.” 

Medicaid is run jointly by the states and the federal government. It was created in 1965 in order to ensure that people living in poverty, and those whose disabilities required 24/7 or nursing-level services, were guaranteed care. 

But, Medicaid only entitles disabled and elderly people to receive care if they are in an institution, nursing home, or other licensed Medicaid facility. According to federal law, there are to be no waiting lists for institutional care.

And that’s Medicaid’s institutional bias. That’s what’s being waived in Home and Community-Based Service programs, the requirement that you live in an institutional setting to receive the care you need to survive. 

It wasn’t until 1981--when Katie Beckett’s parents found out they couldn’t bring their disabled daughter home from the hospital--that the system finally began to change. In 1983, Congress finally allowed states to “waive” Medicaid’s institutional care restrictions and, for dependent children with disabilities, family income could also be waived. This new home care system was given the name “Home and Community-Based Services.” 

But Congress has never fully funded the home care system, preventing thousands who need HCBS from accessing care. Forty years later, it’s still the case that NO American is entitled to receive care in their own homes through Medicaid, and the government will only guarantee care in an institutional setting. Forty years later, we have over 800,000 people on waiting lists for home care because states can limit HCBS waivers and the vast majority of Americans with disabilities, and a rapidly growing number of seniors, do NOT want to receive care in an institution. 

That’s why all of us with lives at stake need to keep pushing to FINALLY get full funding for HCBS. 

If Congress passes the Better Care Better Jobs Act, we could clear out those waiting lists. Everyone who needs it could finally receive home care. More than that--home care workers could finally be paid what they deserve. Too many of them earn less than a living wage. Did you know that the average health care worker in this country makes only $12 per hour?

Home health care workers are entrusted with people’s lives. Their work is complex, and it requires skilled training. These workers deserve more respect, better wages, and benefits. We can’t ask them to sacrifice their own families’ needs for their jobs. The Better Care Better Jobs Act would create 500,000 new health care jobs, with better wages, wages people are willing to work for.

Under the Better Care Better Jobs Act, States would have the funding to establish training programs for home care workers, ensuring that we have a stable workforce for our community going forward. A September 2021 analysis by Moody’s Analytics also shows that passing the BCBJA will have a positive impact on the economy, boosting our GDP and creating more jobs.

Contact your federal representatives today! Together, we can knock down the wall of Medicaid’s institutional bias forever! 

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Jeneva Stone is the blog manager for Little Lobbyists, and she also volunteers her time with several other disability and health care organizations. She is also a writer. Her son Rob is a disability rights and health care advocate, as well as an artist.

Dear Senator Sinema,

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

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

Taryn and her father

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

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

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

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

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

Your constituent,

Dawn Bailey
Registered Voter,
Chandler, AZ

Kim’s sons Elijah (l) and Isaac (r). [image description: Two young boys with light skin stand closely together with their arms around each other. One wears a blue plaid shirt, the other a yellow t-shirt with the words “Wakanda Forever” and an image of Marvel Comics’ Black Panther.]

My son’s night nurse just told me she’s leaving home health care. Through tears. She cried as she told me how much she loves us all and how hard she tried to make this work. She cried as she told me that the health insurance she is offered doesn’t cover her or her daughter’s monthly medications, and she just can’t go on without making ends meet. 

Isaac’s nurse began working with him two years ago, stepping in to become his regular day nurse, which helped him attend school – which he often missed. When his needs changed and we needed a night nurse, she quickly shifted gears to fill that spot. In Virginia, where I live, the median wage for home health care workers is $10 per hour. That’s right, $10 per hour. Nationwide, the median wage is $12 per hour. A living wage is at least $15 per hour. 

Isaac’s nurse cried as she promised to stay on as long as it takes to train someone new to do her job because she is so upset with herself for leaving us like this, even though it’s her family that’s been paying the price. 

My son Isaac is a hilarious, somewhat mischievous twelve year old. He loves all things Marvel and Mario Kart. He can’t wait to get home from school each day to get outside and play with his friends. Building forts in the woods is one of his favorite things to do.

Isaac had a tracheotomy to help him breathe until June of this year. He still has an open hole in his neck where the tracheotomy was. He also has a feeding tube that delivers nutrition directly to his intestines at night. He requires overnight care as his airway is still being assessed, and his tube feeding requires supervision. Without nighttime care he could dislodge his feeding tube, and it can only be replaced during a hospital stay. 

I am exhausted. Beyond exhausted, if that’s possible. I am so tired of working full-time to be the only financial support for my two boys, while juggling their needs, Isaac’s medical needs, and FIGHTING my government for BASIC needs. 

For my family, the home health care nurses funded by Medicaid’s Home and Community-Based Services (HCBS) are basic needs. When Isaac has a nurse, I can sleep at night. I know that somebody who is qualified is monitoring Isaac and keeping him safe.  Because of this I can be prepared to work the next day, and provide stability and much-needed health insurance for my children.  

The U.S. Capitol Dome illuminated at night—in the foreground are a bank of pale blue lights spelling out “Care Can’t Wait.

The Better Care Better Jobs Act (BCBJA), part of the President Biden’s Build Back Better agenda, is currently waiting for a vote in Congress. This bill would raise wages for the direct care workforce, create more jobs, and eliminate state waiting lists for HCBS programs. Over 800,000 Americans are on waiting lists nationwide, and this legislation would create 500,000 new health care jobs, which would, in turn, allow 1.1 million family caregivers to return to work. A September 2021 analysis by Moody’s Analytics shows that passing the BCBJA will have a positive impact on the economy, boosting our GDP and creating more jobs. 

Why can’t Congress act to pass this vital legislation? Why can’t Congress provide full HCBS funding of $250 billion we need to make sure that my son, my family, and millions of other Americans have the care we need?

My son needs nursing care so that I can work and support my family. My son’s nurse needs better pay so she can support her own family. But some members of Congress are fighting funding for the Better Care Better Jobs Act and the Build Back Better Act because, they say, the cost is too high. For who? I’m part of the economy, too. 

I need your help, because we will all need care at some point. Call your representatives NOW. Demand that they stand up and fight for our families. Tell them our care infrastructure is in crisis. Pass the Build Back Better Act, because Care Can’t Wait.

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Kim Crawley is a single mom to two amazing boys, Isaac (12) and Elijah (9). She has been a full-time special education teacher for 20 years, born and raised in Northern Virginia, and she loves raising my boys there. Kim became an accidental activist when her son Isaac lost his health insurance after hitting a lifetime maximum at the age of 15 months. Her family has been proud members of Little Lobbyists since shortly after its inception.

Elvina’s daughter Colby. [image description: A young woman with light-colored skin smiles at the camera; she is seated in a family kitchen. Her brown hair is pulled back from her face. She has braces on her teeth, and wears a gray hoodie.]

My daughter Colby has turquoise braces and a dimple in one cheek. Her blue eyes are turning green, just like mine did as a teenager. She wears her luxuriant brown hair pulled back to frame her differently shaped ears. The photographer Mary Ellen Mark called her ears, “her signature.” She loves the word “shoes.” She loves Lana Del Ray, Clairo, and Cat Power. Her body is rocked often and deeply by intractable epilepsy. 

During her first EEG as an infant she was regarded as a miracle. That she could not only survive the massive and frequent seizures, but could smile and breath and breast feed and pincer grasp at blueberries--she should not have been able to do any of this, given the severity of her seizures. Over the following 16 years, she has had brain surgery and multiple orthopedic surgeries.

Colby has apraxia and is nonspeaking. She has a series of sounds and gestures that people close to her can understand in context. She reaches toward the shelf with crackers when she is hungry. She holds your hand when she wants you to stay near. She pushes away the shirt she wants to wear when you give her a choice between two. 

Colby receives Medicaid Home and Community-Based Services (HCBS) through New York State, where we live. She qualifies for nearly 24/7 care. We have never been able to staff those hours. It’s the same story as everywhere else: low wages and complex work leads to a nearly non-existent labor pool. Add to that the high cost of living in a college town, such as Ithaca, and people cannot afford to live on current wages prescribed by state policies. 

 Colby is 16 years old now.  She has never slept through the night. She needs emergency meds administered. She needs care and attention before, during and after seizures. Colby needs full assistance to eat, attend to personal hygiene, and get around. Her independence will always require significant support from other people. 

Colby and Elvina. [image description: A black and white photo of a mother and daughter. The daughter, to the left, looks away from the camera, smiling. The mother looks directly at the camera.]

The first few years of Colby’s life I stayed home and my husband worked. His work required traveling for long periods of time. Then I took a turn returning to work, which was great for a while. Eventually though, the care of a medically complex child became impossible for me to balance with full-time work outside the home. We could find no other qualified caregivers to work for what New York State’s Medicaid HCBS paid, nor could we, as parents, be compensated for her care. In the hours I work that someone else could be employed to perform, I feel that I am not a parent. I am a caregiver, and caregiving is not the same as parenting. Colby is not work, but her care is work. 

It was a rapid descent from leaving full-time work to the food stamp application. Being unpaid caregivers meant our family qualified for $400 or so per month in SNAP benefits, and $600 or so per month in SSI based on Colby’s permanent disability. For a family of four. With a Grammy Music Award and a Smith College education between the parent heads of household, this was a shocking turn. 

But instead of deciding this was impossible, which it is, I dug my heels in.  We did what we had to do, like put dental care and car repairs on credit cards. Truly, what were our choices? Put our daughter in a permanent institutional placement? So I can work and afford life? Where are Colby’s person-centered choices in that equation?

My daughter deserves the dignity of excellent care that humankind, and a wealthy nation, are capable of providing. Our country needs to treat caregiving labor as infrastructure. And caregiving labor needs to be paid no matter who is doing the work. Colby’s care should not equal poverty for us, or for a direct support worker trying to subsist on current substandard wages. Raising wages for all care work would be a net positive to our economy. It would raise the GDP, lower poverty, and raise savings. The dignity of a liveable wage is within our capacity as a country and economy.  

A Message from Little Lobbyists:

Caregiving is infrastructure. Our kids, and all people with disabilities, have a RIGHT to access the services and support they need to survive and thrive in their own homes and communities. But in order to make that civil right a reality, we need funding to support better jobs for caregivers and improve the quality and quantity of care for our families. That's why Little Lobbyists support the Better Care Better Jobs Act! Please call your senators and tell them why YOUR family needs them to pass full funding for this historic bill in the reconciliation package!

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Elvina Scott is a mother, writer, and athlete. She has two children, one with disabilities, including intractable epilepsy. This parenting experience informs her writing and advocacy work. Elvina is an ultra distance runner. She is a graduate of Smith College. 

Cailyn out in her community, assisted by a direct support aide. [image description: A young disabled teen wearing pink sunglasses and a bright pink outfit sits on an adapted red bike. An aide assists her moving through a sensory “tunnel” (an open pipework on which various objects are suspended).]

The Better Jobs Better Care Act would provide desperately needed funding for Home and Community-Based Services (HCBS) for thousands of disabled children and adults nationwide. Through Medicaid waivers, HCBS provides skilled nursing services, direct support professionals, and equipment and supplies not covered by private insurers to people with disabilities so that they might live where they choose and remain in their homes and communities, rather than be sent to institutions. 

HCBS is an essential part of disability rights. However, some in Congress don’t understand these rights. Uninformed decisions by lawmakers threaten the lives of disabled people and those who care for them. Jen Reese, mom to Little Lobbyists Cailyn, shares her story. 

Tell us about your family.

My husband and I have two daughters, ages 9 and 13, and we live in Virginia. My husband is a software developer, and I work in a role supporting families like mine--with kids with disabilities. 

Explain your daughter Cailyn’s complex medical needs and disabilities.

My daughter Cailyn is 13 and a happy, smiley girl. At five days old we noticed her having seizures, and at a week old she spent her first week in the hospital. She was diagnosed at 4 years old with a rare genetic anomaly that affects proteins in her brain. Years of uncontrollable seizures have left her with intellectual and developmental disabilities. Due to these, she needs total care, including her liquids and medication via feeding tube. Cailyn does not communicate verbally and uses a wheelchair for mobility.  

When did Cailyn first get access to HCBS? How many years did you wait?

When Cailyn was about 16 months old, an early intervention therapist convinced us to apply for a Medicaid Waiver. She qualifies due to her disabilities and need for nursing home level of care. There was no waitlist for the entry-level Medicaid Waiver in Virginia, and it was life changing. We were able to have caregivers come into the house because a regular daycare could never take care of her. Plus she’d be super-susceptible to any germs from the other kids. We have good private health insurance that covers a lot, but sometimes medical equipment or services aren’t fully covered. Our out-of-pocket costs were tremendous before the waiver. Medicaid is Cailyn’s secondary health insurance and helps her stay in our home instead of an institution. 

If we didn’t have Medicaid, I would not have been able to keep working, we would not still own our home, and having another child would not have been possible, given the financial limitations. Cailyn waited almost 10 years for Virginia’s Developmental Disability Medicaid Waiver, a second Medicaid Waiver in Virginia that includes supports for employment and group homes. There are still approximately 12,000 people on that waitlist in Virginia, and they are given the waiver based on priority. Sadly, some adults have to be facing homelessness before they are awarded a Medicaid waiver. 

How do HCBS help your child and your family survive and thrive?

Without Home and Community-Based Services, our daughter would not be home with us. She would live in an institution. 

Our extended family has a history with institutions, and I saw it break my Grandmother’s heart. Her youngest son, my uncle John-John, had cerebral palsy and severe seizures. I remember him and have pictures of me as a little kid on the day we had to take him to an institution.

I can’t imagine my Grandmother’s guilt and fear. Guilt that she couldn’t care for her son anymore and fear of what would happen when strangers were responsible for his well being. Over the years, I remember stories of him getting severe burns because no one checked the temperature of the bath water before putting him in, and of someone dropping him and breaking his arm. But at that point, my Grandfather had passed away and my Grandmother had a bad back injury from having taken care of my uncle for as long as she could at home. 

The system has changed, and Home and Community Based Services will help my husband and I keep Cailyn home. We’re able to have nurses come into the house and help care for her, and we’re able to focus on activities with her little sister, keep up with household chores, or just take a break. 

Some members of Congress don’t think HCBS are real infrastructure. How do you respond to that? 

Infrastructure is defined as the basic physical and organizational structures and facilities needed for the operation of a society or enterprise. 

Seriously, you’re living in a bubble if you think Home and Community-Based Services aren’t infrastructure. Societies are required to take care of their disabled people, and we haven’t been doing a good enough job. If I didn’t have help for my child, I’d be out of the workforce. Caring for Cailyn also provides jobs for others. Infrastructure is not just bridges and roads. 

There are HUGE waitlists for HCBS, there aren’t enough providers for services, and the reimbursement rates are so low it’s despicable. A babysitter in my area for a child without disabilities costs about $20 an hour. Medicaid pay rates for caregivers for people with disabilities in my area has just hit $13.60 an hour--even Target starts its workers at a higher rate of pay than that. 

What would happen to your child and to your family if the HCBS you receive were reduced or even taken away?

Threats to Medicaid under the Trump Administration pushed my anxiety levels through the roof. If HCBS were taken away, my family would be broken. How would we come up with $6,000 extra dollars a month to pay for the feeding tube supplies and special formula Cailyn needs, plus diapers, plus medications, plus wheelchairs, plus a hospital-style bed, plus a modified van for transportation etc., plus, plus, plus …

How would we be able to keep her home? We’d be financially devastated. Bankruptcy would have to be a consideration, including selling our house, cars, and raiding our retirement fund--it’s a nightmare I’ve had many times. It is all overwhelming and makes me want to vomit at the thought of it. 

Do you know of families in Virginia who are still waiting for HCBS? What would you urge them to do?

I know many families who are still waiting--12,000 in Virginia alone. Waiting for our government to do the right thing and provide funds for disabled people to have a life like everyone else. Everyone should be able to live where and with whom they want. If they need supports, we have to make sure they are in place--healthcare, transportation, housing, and job supports. Please do the right thing. President Biden’s funding recommendations are a wonderful start and it’s really just the right thing to do!

Describe the power of HCBS in a single sentence. 

HCBS help keep my daughter happy, healthy, and safe. 

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Jen Reese is a member of Little Lobbyists from Virginia.

Dear Senator Warner,

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

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

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

Jill Jacobs with Senator Warner

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

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

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

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

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

Let's talk Senator.

Your constituent,

Jill Jacobs

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

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

Sandra Stein (r) with her husband Matt (l) and their son Ravi (center) [image description: A white man and white woman pose on either side of a young Black man seated in a wheelchair. All three wear t-shirts with the words, “Caregiving Is Infrastructure.”]

“We shouldn’t live on this street anymore” I muttered to my son while pushing his wheelchair uphill toward an outdoor school gathering. I could feel my heart rate climb as we neared the top of the hill and sweat pooled inside my mask. My mind was occupied with many thoughts: the changes in state policy disallowing inter-state telehealth visits, the multiple medical facilities saying they would not provide care due to policy or insurance or prohibitive cost, his upcoming transition to middle school, and the choreography I was to teach his friends at the park where we were heading. 

Through his assistive communication device, my son had told me he wanted to do a dance performance for his upcoming graduation ceremony. This would involve all of his classmates dancing to the song Best Summer Ever, from the radically inclusive movie of the same name. We arrived at the park, my heart still pounding. I ignored it. I talked with his teachers. I took pictures of him reuniting with friends after fifteen months of strict quarantine. I fed him lunch. I taught his class the dance moves he had approved using hand signals. I didn’t say anything to anyone about my heart rate. I just kept going. 

Stopping what I was doing and asking for help did not even occur to me. As a family caregiver, I am my son’s transportation and food delivery system, his advocate and his interpreter. I am lauded for my perceived sacrifice and determination. I am hailed for heroism, tenacity and grit. Throughout the pandemic, my husband and I have been supplying these essential Home and Community-Based Services (HCBS) for our son on our own.

It was only when one of his friends asked if he could push my son in his wheelchair that I realized how bad I was feeling. 

“No honey, I’m using the wheelchair to balance myself.” 

I am accustomed to ignoring my own health needs as part of the heroic trope often projected onto--and internalized by--family caregivers. I push on. I power through. 

But all unattended infrastructure, like buildings and bridges, can collapse, and I suddenly felt like I might do just that. Returning to our apartment I told my husband my heart was racing and he connected me to our son’s pulse oximeter machine. One eighty. My heart had been racing at this speed for over an hour. But now I felt scared. My father and grandfather both died young of  heart attacks. My hands and feet and face went numb. I laid down so I wouldn’t fall. My husband called 911. EMS hooked me up to EKG, diagnosed my supraventricular tachycardia and gave me IV medication to stop and reset my heart before taking me to the ER.  I was discharged nine hours later with a referral for cardiology follow-up. 

I was shaken. How did I let this go on for so long? What would have happened to my son if I had blacked out on the hill? 

At my follow-up appointment the cardiologist explained this event saying, “Most people come to a stop sign, slow down and stop. Your heart instead drove in really fast circles around it.” I laughed at the aptness of this metaphor for my life and cried when he diagnosed me with caregiver fatigue. 

Yes. I am exhausted. I am bone-tired from battling insurance denials and inaccessible architecture and ableist attitudes (while continually unlearning my own), and constantly being told “No” when trying to meet my son's medical and educational needs. I am depleted after over a year without paid HCBS caregivers we could not safely have in our apartment until my son was vaccinated. I am worn down by the byzantine administrative hurdles and limited funds available to pay for caregiver services now that  we can reinstate them. I am tired of running in circles around stop signs.

The Biden Administration’s plan to invest in human infrastructure--in Medicaid and HCBS--a bill called The Better Care Better Jobs Act: A Historic Investment in the Care Economy, is, in fact, historic. Our country’s failure to invest in caregiving as infrastructure has caused significant loss and unnecessary suffering to disabled people and their families. 

I am no longer willing, or apparently able, to allow the heroism trope to govern my behavior. I refuse to deny my own limitations or allow them to impede my son’s health and wellbeing. I don’t want to hear well-meaning people say,, “I don’t know how you do it,” or “God doesn’t give you anything you can’t handle,” or “He is so lucky to have you.” I want us to collectively dismantle the unjust structures that limit access to disability services and support. 

Twenty percent of Americans have at least one disability. The pandemic has shown that any one of us could suddenly and unexpectedly become disabled or a long-term caregiver, or both. It’s time we organize ourselves for this reality. We must invest, now, in Home and Community-Based Services. 

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Sandra Joy Stein is a writer and educator. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What inspired you to become involved in direct services advocacy? 

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

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

How has advocacy given meaning to your life?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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