Jenny takes a selfie in one of the California Assembly buildings in Sacramento. She wears her trademark bright pink glasses, as well as a bright pink blazer. Behind her are the ornate columns, gates and tile floors of a legislative building.

Hi! I’m Jenny McLelland and I’m the Director of Policy for Home and Community-Based Services for Little Lobbyists. My family lives in Clovis, a small city in the agricultural Central Valley of California. My husband is a physical education teacher, and I’m a retired police officer. We have two teenage children - Josephine and James.

In my role as Director of Policy for Home and Community Based Services, I get to help turn family stories into solutions. That means I’ve had to learn a lot about Medicaid Home and Community-Based Services waivers. Medicaid HCBS Waivers are the legal framework that pays for children like my son to get nursing care at home. I want to make sure that any child who needs nursing care at home can get it, like my son James.

I got involved with Little Lobbyists because of my 13-year-old son James. He’s a really fun kid. He gets good grades, he plays percussion in the school band, and he loves 3D design and printing. James has a rare genetic disorder that affects his airway and breathing, so he has a tracheostomy (a plastic tube in his neck) to help him breathe and he uses a ventilator at night. 

My biggest priority as an advocate is to make sure medically complex kids have access to nursing care at home. My son spent most of the first year of his life in an institution because we couldn’t get the support we needed to bring him home - I don’t want that to happen to anyone else.

James (l) and Jenny (r) pose in a hospital room at discharge. Jenny is wearing bright pink eyeglasses and has chin-length blonde hair. James is wearing a sage green Pokemon shirt and holds a paper shopping bag and a robot. Behind them are an unmade hospital bed, and a variety of medical equipment and monitors.

There are two equally important sides of advocacy: telling stories that help people understand what life is like for disabled kids, and using those stories to solve problems.  Little Lobbyists does a great job of helping families tell their stories in a way that puts a human face on a complicated policy.

When I first got involved in advocacy in 2016, it was as a storyteller, working to save the Affordable Care Act. James benefited from a provision of the ACA that banned health insurance companies from imposing “lifetime limits” on medical care. Because James spent most of the first year of his life in the hospital and in a nursing home, he exceeded the cost that would have been his lifetime limit when he was only a few weeks old.

As I got more involved, I realized that what I really love is the details. I like reading the details of Medicaid Home and Community Based Services waivers–these are the state programs that give kids access to Medicaid services at home. While the federal government establishes a general set of rules, every state designs its own programs, so figuring out what the rules are for your state can be confusing. I like helping people figure out what’s going on with their own state waivers and figuring out who to contact to fix things.

You can reach out to me at jenny@littlelobbyists.org to talk about:

• How can Medicaid help disabled kids live at home with their families.

• What other programs help disabled children access their full civil rights in the community.

• How Medicaid can help disabled young adults who are aging out of the pediatric care system.

I’m excited to work with the team at Little Lobbyists so that our kids can write their own stories!

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Jenny McLelland is Little Lobbyists’ Policy Director for Home and Community-Based Services.

Elena Hung wears a Little Lobbyists button, holding a microphone, and speaking at a podium that says “Care Can’t Wait.” Photo credit: Brooke Anderson @MovementPhotographer

On August 26, 2024, the Care Can’t Wait bus tour kicked off its first event in Chicago, Illinois.  "Care on Tour" would wend its way through nine cities in seven states. It was part of an ongoing national campaign by the Care Coalition that highlights the importance of affordable, accessible care – including aging and disability care, child care, and paid leave – through powerful storytelling, community engagement, and policy advocacy. 

On the Care Tour, we passed the mic and heard from local families who are struggling with reliable and affordable care for their loved ones.

We heard from family members forced to choose between caring for themselves or their parent, or their child: a choice no one should ever have to make.

We heard community leaders speak on paid family and medical leave.

And, close to my heart, we had disability representation throughout the Care Tour.  In Michigan, we heard from Dessa Cosma, the Executive Director of Detroit Disability Power, and, in Georgia, from Dom Kelly, the co-founder and President of New Disabled South. 

We also heard from elected officials from the U.S. House of Representatives, including care champions Debbie Dingell and Nikema Williams, who pledged to continue their support of robust care policies because they understand what is at stake.

As serious and heavy as this topic can be, there was also so much joy.  That’s right: joy!  The bus tour organizers made time and space for joy at each stop: we had marching bands, a popsicle truck, face painting, live music, a stilt walker, a disabled acrobat performer, and much more!

There to represent Little Lobbyists families, I was honored to bear witness to the personal care stories everyone shared at the mic and the intimate conversations that followed.  As I spoke alongside caregivers, care workers, those receiving care, and elected officials, I couldn’t help but note the common thread that connected us all. My care story might not be the same as yours, and your care story might not be mine, but it is undeniable that we all have a care story.  This tour felt like we were one community: we each had a care story that united us in deeply personal and urgent ways.  Care wasn't something that happens to other people; we are all involved with care. 

Group photo at Love Park in Philadelphia, PA: A couple dozen advocates pose by the LOVE sculpture (bright red “L” & “O” stacked above “V” and “E”) with the skyline of Philadelphia behind them. They wear colorful t-shirts and hold up signs, including “Care Can’t Wait” (yellow, white and purple lettering on a dark purple background). Photo credit: Brooke Anderson @MovementPhotographer

This is my care story:

My daughter Xiomara, the joy of my life, is the reason I was on the tour and why I co-founded Little Lobbyists.  She turned ten this summer and just started the fourth grade.  These were two milestones that were never, ever promised to a medically complex and disabled child like her. 

Xiomara attends school with her nurse.  She uses a tracheostomy to breathe and a feeding tube for all of her nutrition.  She has a nurse by her side at all times to care for her medical needs and keep her safe.  Without a private duty nurse, Xiomara would not be able to attend school and learn.  Without a one-to-one nurse, kids like her would not be able to live at home with their families.

I think of all the disabled children who cannot attend school because they don’t have the care they need.  I think of all the disabled children who cannot live at home, and the families that are torn apart because they don’t have the care they need.

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

And the first thing I would change is to fully fund home and community-based services.  Doing so means that disabled children and disabled adults can live in the community they choose, surrounded by their loved ones, and receive the care they need. 

It wasn't that long ago that a child like mine would have been automatically institutionalized–kept away from her family and her community– just for being disabled. Some still are. Disabled people risk being institutionalized when they can’t get the care they need at home.  That's not right.

Because there is nothing wrong with being disabled!

What is wrong? Disabled children not getting the care they need.

That is my care story, and the care story of countless Little Lobbyists families. Our stories need to be told and heard.  We know what is at stake if our disabled children do not receive the care they need.

“Care on Tour” was a periodic reminder that while a few are trying to destroy what we hold sacred, there are many more of us trying to create a world of justice and equity and joy.  We need to work hard, but we cannot deny ourselves joy in the process.  If we do, we are missing the whole point.  If we are fighting for our kids to survive, but not thrive, we are missing the whole point.  We can do both!  We can survive AND thrive!  We can work hard AND play hard.

We will hold onto that joy while we all do everything possible to elect leaders who will champion care and fight for our disabled children to live at home, attend school, and be part of their communities. 

Group photo in front of the Care Can’t Wait bus in Raleigh, NC.

Photo of Little Lobbyist Adonise with his mom Anne in New York, holding a sign that says “El Cuidado No Puede Esperar” (“Care Can’t Wait” in Spanish).

Photo of Nicole Jorwic, Dom Kelly, and Elena Hung

Photo of Nicole Jorwic (Chief of Advocacy and Campaigns, Caring Across Generations), Dom Kelly (Co-Founder and President, New Disabled South), and Elena Hung (Co-Founder and Executive Director of Little Lobbyists). 

Photo of marching band performing in front of the Care Can’t Wait bus.

Photo of Little Lobbyist Cole in Pennsylvania holding up a sign that says “Care Can’t Wait.”

Thank you to the Care Can’t Wait Coalition and to the partner organizations who supported this bus tour:  Caring Across Generations, National Domestic Workers Alliance, MomsRising, Paid Leave for All, SEIU, and GoFundMe.

Special thank you to Ai-jen Poo and Nicole Jorwic for your leadership, partnership, and friendship.

#CareCantWait

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Elena Hung is the Co-founder and Executive Director of Little Lobbyists. She lives in the Washington, DC area with her two human children and two feline children. Elena enjoys hiking in the mountains, wearing dresses with pockets, and eating potatoes.

Adonise, an elementary-school-aged Black boy, poses with his arms out wide on the rooftop plaza of the MLK, Jr. Library in Washington, DC. He’s wearing a teal-blue Little Lobbyists t-shirt and khaki pants. The DC city skyline is behind him.

My son Adonise is a second-generation Haitian-American who has a teacher and a technology professional for parents. Adonise is curious, rambunctious, funny, and intelligent. He’s a budding drummer, and he loves the playground and to wave the Haitian flag every morning. We call him Donnie, but I call him Don. He was born prematurely and came home just 4 days shy of his first birthday, after 361 days in two different Neonatal Intensive Care Units (NICU) in two different states. Donnie’s disabilities include autism and cerebral palsy. He also has a tracheostomy to help him breathe.

Our family of four journeyed to Washington, DC, to learn how we can better support my son's needs, and we could never have imagined how our cup would fill with so much love, support, and knowledge. Imagine venturing to DC to learn, and then just be baptized by the support and awareness of so many amazing people. I wanted to dive into understanding how I can educate those in my community about Home and Community-Based Services (HCBS), Medicaid services that help children and adults live in their communities, where they belong. My goal was to bring what I learned back to Harlem.

As representatives of Little Lobbyists, we attended the White House Disability Pride Month Convening and, the next day, the Care Can’t Wait Coalition’s Community Integration Summit. Throughout our lives, we have encountered many transformative experiences. However, this moment stands as the most significant intersection for me. For the first time, I felt a huge sense of belonging. My identity includes various elements: a mother, a multilingual Black woman from Harlem, NYC, a parent to extraordinary children, and the wife of a supportive Black man. Adonise, too, felt free, felt the love, felt seen. He was ecstatic visiting the sights in DC, meeting other disabled children and having fun, and just playing and being a kid.  

Wearing his eyeglasses and Little Lobbyists t-shirt, Adonis poses on a city street with the U.S. Capitol building the distance. He has both arms raised above his head and flexed in an expression of exuberant power.

When Adonise received an invitation to the White House, I was apprehensive about my lack of knowledge in navigating this unfamiliar space. But at the event, when Anna Perng, Senior Advisor at the White House’s Office of Public Engagement, stepped up to the microphone and said: "In this room, we welcome all differences, and we will not silence anyone," her words struck a chord with me, and as the speakers shared their personal experiences, I was moved. Their desire to thrive in this world, despite the challenges they faced, bubbled up emotions within me.

The event celebrated the achievements of the disability community and highlighted the importance of continuing the fight for disability rights, led by those with lived experience. My heart swelled when disability rights lawyer and activist Haben Girma concluded the session by discussing Helen Keller's published works. Keller’s and Anne Sullivan’s stories were a constant source of inspiration during our hospital stay, especially Sullivan teaching Helen to build on her abilities. While my son's will to survive was a driving force for us, we didn't just want him to survive, we wanted him to thrive, regardless of the limitations imposed by the perspectives of his medical team.

Unfortunately, ableism can feel as if it is in the very fabric of the Neonatal Intensive Care Unit (NICU) and PICU in the U.S., woven into every knot of these institutions. Ableism influences how specialists approach acute events and discuss quality of life. Imagine the positive impact if disability advocates worked alongside, or provided training to these professionals, transforming the narrative around what life with complex medical needs can look like. 

Adonise sits, smiling broadly, in a meeting room chair in front of a large banner that reads “Disability Integration Makes Our Lives and Communities Whole.” At the top of the banner is the Care Coalition logo, a corona around the words “Care Can’t Wait.” To the right of Adonise is an electronic sign displaying the topic of the next panel and the speakers on it.

At the Community Integration Summit, we listened to many panels filled with adults with disabilities, which meant recognizing that advocating for people with disabilities starts with teaching our children self-advocacy from the start of their journey. I was eager to have a more extensive conversation on all these issues I had recognized for years. 

I had an opportunity to ask a question of the panelists, and decided to express my concerns about the need for training NICU, PICU and ICU physicians on the positives of living with complex medical needs and disabilities. As I was asking my question, it dawned on me, “Oh God, I am in a room where everyone understands.” I was overwhelmed with emotion because for years we have been yelling into this void and I had had enough. There are not enough people with disabilities that work within the ICU space, and I want there to be more. 

It was also amazing to see my husband speak up for the fact that there were not many dads, especially dads of color, in the disability advocacy space. He hears so many maternal perspectives on caregiving, but has rarely been able to see fathers like him that are in the thick of it. 

Overall, our time in DC spoke to much of the work and education we have to continue to do as a family. We are strong and come from a long history of revolutionaries. May we always tap into that and teach Donnie how he will do the same so he can create the blueprint for the next generation of kids like him. 

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Anne Louis is Adonise and Adriande’s mom. Anne is a family advocate representing Harlem, NYC. She is a digital technology professional who currently works for Charter Communications. Anne speaks several languages, but aspires to become more fluent in disability policy. She is passionate about her Haitian heritage, and is eager to be a bridge between complicated policy  paperwork and the quality care everyone deserves regardless of their education or ability to speak English. 

Photo Credit: Rah Studios. Image: Just some of our nationwide Little Lobbyists family at the Care Coalition’s Community Integration Summit in Washington DC! Image description: A couple dozen children of various ages and their parents pose in front of a tan and black paneled wall at the Martin Luther King, Jr. Library in downtown Washington, DC. Most of the group members wear t-shirts with the Little Lobbyists logo.

In July, the Care Can’t Wait Coalition sponsored several events on community integration in Washington, DC, including a panel at the White House, a Congressional briefing, and a Summit at the Martin Luther King, Jr. Memorial Library. Community integration is at the heart of disability rights, and is supported by the Americans with Disabilities Act (ADA), the U.S. Supreme Court’s Olmstead decision, and the 504 regulations. 

Our Little Lobbyists families were there for all of them! Our families traveled from all over the country to learn from disability experts and to tell our elected leaders that care can’t wait.

The Community Integration Summit offered three of our families the opportunity to speak their truth on the importance of belonging–in our communities, at school, in recreation, in the media, and, frankly, everywhere. You can watch a recording of the summit here.

The summit featured five panels:

• History of Disability Rights, Future of Disability Justice and Intersection with Care

• Community Integration Makes Our Homes and Communities Thrive

• The Disability Lens of Paid Leave and Child Care

• Centering Disability in Storytelling in the Media

• Inclusive Organizing for Change

Photo credit: Tirrea Billings. Description: Jenny McLelland, a white woman with chin-length blond hair holds a microphone. She’s seated in front of a navy blue backdrop with the Care Can’t Wait logo on it. She wears eyeglasses with bright pink frames, a white suit jacket and a turquoise Little Lobbyists t-shirt.

Jenny Mclelland offered her thoughts in the second panel, “Community Integration Makes Our Homes and Communities Thrive.” Jenny is Little Lobbyists’ Policy Director for Home and Community-Based Services (HCBS). 

Jenny spoke movingly about the power of Medicaid to keep our disabled loved ones in their community, noting that her son James had had to spend his first year of life in an institution before coming home on one of California’s HCBS waivers, “Medicaid is the glue that holds our family together.” Explaining that “50 different states have 50 different sets of rules,” Jenny advocated for ending waiting lists nationwide.

Little Lobbyists’ Communications Director Laura LeBrun Hatcher moderated the fourth panel, “Centering Disability in Storytelling in the Media, Pop Culture and in Narrative Change.” Laura emphasized the need to hear directly from disabled people when news outlets and others report on disability issues. Among the panelists were Rico and Isra’El Winston, Little Lobbyists members.

Rico introduced his son Isra’El, who is Autistic, emphasizing that he had found his life calling and purpose on his journey with his son: “I want everyone to look around … behind every beautiful face [here] is a compelling story waiting to be shared and needing to be told.” He then described the numerous media projects he and Isra’El had worked on, including films, comic books, and television programs, all of which centered disability as a force for change.

Photo credit: Tirrea Billings. Description: Laura Hatcher (white woman with long brown hair), Rico Winston (Black man with short hair and a mustache) and Isra’El Winston (young Black man with a short cut with a fade) sit in front of the navy blue Care Can’t Wait backdrop. They are all wearing jeans and dark blue Little Lobbyists t-shirts.

Isra’El, 14 years old, spoke at length about his advocacy journey, noting that his dad is “always by my side, showing me that I am important, amazing and loved. With his support and love I’ve learned that caring for and respecting each other is how we can change the world.” 

When asked what he’d like other children to know about advocacy, Isra’El responded, “I want kids to know that they can stand up for themselves and others. I have learned to express my feelings and to do my best to overcome my fears and that we can stand together to support each other, lift each other, and empower each other.”

Our families had tons of fun, too, at all the events! Advocacy can be challenging, but let’s not forget that advocacy is filled with joy!

Enjoy the slideshow! Click on the large photo below to advance the slideshow.

Rico & Isra'El Winston speak at the summit. A Care Can't Wait backdrop is behind them, and they are seated, wearing primary blue Little Lobbyists t-shirts. Photo credit: Tirrea Billings

Group photo of seven Little Lobbyists parents, all wearing LL t-shirts, on the rooftop plaza of the MLK, Jr., Library, with advocate Matthew Cortland. The skyline of Washington, DC, is behind them. Photo credit: Tirrea Billings

Little Lobbyist Simon, wearing a blue LL t-shirt and holding a notebook with the LL logo, poses on the rooftop plaza of the library.

Large group photo of disability activists, Little Lobbyists parents and children, some standing, some using wheelchairs, on the rooftop plaza. Behind them is the city skyline, a bank of heavy clouds, and a rainbow.

Little Lobbyists James and Louisa with LL parent Andrea. They are at the summit at a large table working on a beading project. Andrea is wearing a face mask. Photo credit: Rah Studios

Little Lobbyists Ali and Ethan wear dark blue and turquoise LL t-shirts, respectively. They pose on the rooftop plaza of the library. Visible behind them is the city skyline, decorative foliage in a planter, and a roof overhang. Photo credit: Rah Studios

Little Lobbyists Roger, Jeneva and Rob pose inside the conference area in the MLK library. Rob is using a wheelchair and his vest is covered with disability advocacy pins. He is holding his AAC communication switches. Photo credit: Rah Studios

Little Lobbyists Danielle and Destiny pose with friends. Both moms and their toddler daughters wear LL t-shirts. They are inside the conference area at the library. Photo credit: Rah Studios

Little Lobbyists Victoria and Cole sit outside on the library rooftop plaza. Victoria has her arms around Cole, who leans into her. They wear LL t-shirts and the city skyline is behind them. Photo credit: Rah Studios

Little Lobbyists Teddy and Sanghee sit on a long bench inside the library, with plate glass windows behind them showing the plaza and buildings. They are wearing LL t-shirts. Photo credit: Rah Studios

Little Lobbyists Victoria and Meghann pose with their arms around each other. They wear LL t-shirts and a Care Can't Wait banner is behind them. Photo credit: Rah Studios

Little Lobbyist Adonise poses on a DC city street with both arms raised high. Behind him, in the distance, is the U.S. Capitol building. Adonise wears a turquoise LL t-shirt and brown pants.

Little Lobbyists Ali and Ethan pose in the Old Executive Office building in front of a wall with the White House logo (blue & white oval) above them and a U.S. flag to the left. Ali wears a long skirt and Ethan is dressed more casually.

Adonise wearing a sharp, tailored suit coat, poses in a hallway in the OEB, with a White House logo to his right on a wall.

Isra'El wears a tailored suit coat and pants, with a white button-down shirt. He stands in a stairwell in the OEB, his hand on a decorative metal railing. The 19th century columns and other architectural features of the historic building are behind him.

Isra'El poses--a small figure--under the giant mural at the MLK Jr Library. The mural depicts colorful scenes from the life of Martin Luther King, Jr.

Sanghee poses with her sons Teddy and Leo in the OEB. A decorative flag is to the right. Teddy sits on a rug that partially covers a black and white tiled floor. He looks up at a decorative light fixture. Framed photos of President Biden and Vice President Harris are on the wall behind them.

Adonise sits in a chair in the conference area of the library. Behind him is a banner with the Care Can't Wait logo and the summit title, "Disability Integration Makes Our Lives and Communities Whole." An electronic board is to the right, giving the name and speakers for one of the panels.

Adonise and his mom Anne are seated in a presentation room in the OEB. Disability advocate Haban Girwin is seated next to them. Anne wears a vivid red dress and Adonise wears a suit.

Ethan, James and Louisa, wearing turquoise LL t-shirts, pose on the library's rooftop plaza, under an overhang, with plateglass windows behind them.

Olivia poses with Destiny and others inside the conference area of the library. All are seated on the tiled floor and framed artwork hangs behind them on the walls.

Teddy and Destiny play with a bright red Elmo doll on the concrete flagstones of the library's outdoor plaza. They are smiling and laughing.

Little Lobbyists Danielle and Destiny pose in front of a framed abstract painting inside the library's conference center. They are wearing LL t-shirts and smiling. Danielle is hold Destiny, who has her arms around her mom's neck. Photo credit: Rah Studios

Elena and Xiomara pose in front of an elaborately wood-paneled wall (different shades of narrow wood paneling in long vertical stripes) at the MLK Jr. Library. They wear turquoise LL shirts. Elena bends down to hug Xiomara, who is seated in her wheelchair and wears a rainbow-colored skirt. Xiomara has her arms around her mom's waist. Photo credit: Rah Studios

One of our Little Lobbyists, ready to lead a discussion on community! Image description: A young Black boy with a tracheostomy and a big smile wears a Little Lobbyists t-shirt and sits in a meeting room chair in front of a large banner that reads “Disability Integration Makes Our Lives and Communities Whole.” At the top of the banner is the Care Coalition logo, a corona around the words “Care Can’t Wait.” To the right of the boy is an electronic sign displaying the topic of the next panel and the speakers on it.

Did you know that the Civil Rights Act of 1964 does not ensure civil rights for people with disabilities? The Act “outlaws discrimination based on race, color, religion, sex and national origin.” The Civil Rights Act does not outlaw discrimination based on disability.  

So how then are people with disabilities protected from discrimination and ensured civil rights? It’s complicated, consisting of a set of regulations, a law, and a court decision:

• Section 504 of the Rehabilitation Act of 1973 protects disabled people from discrimination in any program that receives federal funding, which includes Medicaid, other health services, public education, housing, transportation, and the workforce;

• The Americans with Disabilities Act of 1990 protects disabled people from discrimination more broadly, including public settings and situations outside federally funded programs; and

• The Supreme Court’s 1999 decision in Olmstead v. Lois Curtis upholds the right of people with disabilities to receive Medicaid services in their communities, if a set of conditions are met. 

Disabled people face discrimination on many fronts: jobs, education, housing, physical accessibility, and a variety of health services, among others. However, the key right, the one that unlocks all the others, is the right to community integration. Without the right to live in the community of your choice, people with disabilities would still be locked away in institutions. 

What Is the Community Integration Mandate?

The Integration Mandate is the key to civil rights for disabled people. First appearing in the Section 504 regulations, it is codified (established in law) in the ADA. The Olmstead decision upholds it. You can find it in the ADA under Title II, which is based on the 504 regulations that apply to the Department of Health and Human Services. This is the key sentence in the 504 regulations: “A recipient [of federal funds] shall administer a program or activity in the most integrated setting appropriate to the needs of a qualified person with a disability.” 

Note that the word “needs” is not restricted; it may apply to medical, social and/or other needs. You can read the entire Integration section of the 504 regulations here. 

The Integration Mandate protects the right of people with disabilities to receive their Medicaid benefits in their community of choice. These Medicaid benefits include Home and Community-Based Services (HCBS), which may include medical and rehabilitative services, assistance with activities of daily living (ADLs) from home care workers, private duty nursing services (PDN), transportation services, home modifications, and much more. 

Why Are Disabled People Still Fighting to Live in Their Communities?

When Medicaid was established in the Social Security Act of 1965, it guaranteed (or entitled) health care services for low-income persons and people with disabilities. However, people with disabilities were only entitled to receive the care many needed in an institutional setting. Nursing homes and Intermediate Care Facilities are institutional settings where disabled people receive care but are kept segregated from the community. 

Disability advocates fought long and hard to require Medicaid to provide services in the community. The result is HCBS waivers. The problem with these waivers is that they are still “optional” for states–Medicaid’s “institutional bias” is still part of federal law. 

Photo Credit: Rah Studios. Image: Just some of our nationwide Little Lobbyists family at the Care Coalition’s Community Integration Summit in Washington DC! Image description: A couple dozen children of various ages and their parents pose in front of a tan and black paneled wall at the Martin Luther King, Jr. Library in downtown Washington, DC. Most of the group members wear t-shirts with the Little Lobbyists logo.

As a result of ongoing advocacy by the disability community, all 50 states now have HCBS waivers that serve both children and adults, although the terms of each state’s waivers vary tremendously. That’s because Medicaid is a federal/state matching program, and each state is allowed to develop its own terms and conditions:

• Type of disability or disabilities served;

• Age of the person with disabilities;

• Number of slots available for services;

• Length of waiting lists for services;

• Benefits offered from the allowable list of services maintained by the federal government’s Center for Medicare and Medicaid Services. 

As a result, just because you or your loved one receives HCBS benefits in Massachusetts, it doesn’t mean you understand what others receive in California or why. The sad reality is that what constitutes appropriate “community integration” is still a matter of legal interpretation. 

Is There Any Good News?

Yes! As of July 8, 2024, the updated 504 regulations for the U.S. Department of Health and Human Services went into effect, thanks to the Biden Administration. Section 504 has not been updated since the late 1970s, when the regulations were first written. As a result, provision of the ADA, Olmstead, and other laws and court decisions have finally been incorporated into the integration mandate, clarifying and strengthening it. You can read the entire 504 Integration section, which describes how states might be violating you or your loved ones’ rights:

• Definition of a segregated setting;

• What counts as discrimination in the provision of benefits and services by states;

• Definition of “risk of institutionalization.”

In addition, the attached guidance to the updated 504 regulations clearly states: “Compliance with Medicaid requirements does not necessarily mean a recipient [e.g., a state] has met the obligations of section 504.” This means that a state cannot claim that because CMS approved their HCBS plan, they are not discriminating against people with disabilities or a subpopulation of disabled people. 

If you feel your civil rights have been violated under section 504, you may file a complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services. The Secretary of Health, Xavier Becerra, and the Biden Administration are committed to ensuring the civil rights of disabled people. 

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Jeneva Stone is the blog manager for Little Lobbyists, and mom to Rob Stone.

Jenny McLelland (l) wearing a pink suit, James McLelland (c) wearing a dark suit, and Alison Barkoff, ACL Administrator & Asst Sec for Aging, stand in a sandstone hall at the Justice Dept in DC.

Today, June 22, 2024, marks the 25th anniversary of the U.S. Supreme Court’s landmark case, Olmstead vs. L.C., which affirms the right of disabled people to use their state Medicaid benefits to live in their communities, rather than in institutions. The suit was brought by Lois Curtis and Elaine Wilson against the State of Georgia, where Tommy Olmstead was the Commissioner of the Department of Human Resources.

Little Lobbyist James McLelland and his mom Jenny were invited to the U.S. Justice Department’s celebration of the Olmstead Decision to share their story. Like James, all of our disabled loved ones belong in their communities, with their friends and families. 

The McLelland Olmstead Story

James: Hi! My name is James McLelland. I’m here today with my mom Jenny. My dad Justin and sister Josie are in the audience.  

I’m a part of Little Lobbyists – a group that advocates for medically complex children (like me). 

I am 13 years old and I live in Clovis, California. I just finished 7th grade. I play  percussion in the school band. I can run a mile in 7 minutes 35 seconds. I’m fast. I’m a straight-A student too. I’m also disabled. 

I know, I’m a real Renaissance kid. 

I’m proud to be disabled. It’s part of who I am. 

I have a tracheostomy. That’s the tube in my neck, it helps me breathe. Olmstead means I have a nurse that goes to school with me to make sure I keep breathing while I’m in class. I use a ventilator at night—that’s a machine that breathes for me—because I don’t breathe when I’m asleep. Olmstead means I have a nurse who comes to  my house at night to manage the ventilator. If I roll over and the tubes disconnect, he reconnects everything to keep me breathing.  

Being disabled means that I have to rely on other people-–it’s okay to rely on other people for care. 

I’m here today because I’m an Olmstead success story—I’m getting the care I need to live my life the way I want to live it. I want to make sure that other disabled people have the same access to the community that I do.

James reacts with enthusiasm to a signed photo of President Joe Biden he was given.

Jenny: Olmstead is what makes our family work. Olmstead means James can get the nursing care he needs to live safely at home with our family, attend school, and have a life. Today, James is an Olmstead success stor -–but that wasn’t always the case. 

James spent most of the first year of his life in an institution. Institutionalization of children is not a thing of the past. It happened to our family, and it is still happening to medically complex kids just like James.  

The doctors at the hospital where James was born didn’t give us the option to bring him home. They said if we brought him home he would die and it would be our fault. They said that even if he lived, his needs would be so overwhelming that our family would fall apart. 

They didn’t mention Olmstead. 

They didn’t tell us that Medicaid would pay for nursing care at home. 

They told us to trust the system-–and the system was a pediatric subacute facility—an institution–200 miles from our home.  

Putting James in the facility is the greatest regret of my life. 

For a child with a tracheostomy, the biggest medical concern is keeping the airway open. But a baby crying isn’t a medical problem-–it’s just a thing that babies do. 

You don’t solve the problem of a baby crying by suctioning away the secretions–you solve the problem by picking the baby up. In the facility, there was never enough staff to pick the crying babies up. If we weren’t at the facility, James would cry alone in his crib for hours. He would cry so long that he vomited, and he would lay in the vomit for long enough to burn his skin. 

Institutional care provided 24/7 nursing. It met his medical care needs-–but it neglected his most basic human needs. 

Olmstead advocacy is personal for me. I don’t want what happened to our family to happen to anyone else. As James grows into adulthood, I don’t want him to have to sacrifice his independence and live in a segregated facility to access care.  

James (c) and Jeni (r) are seated at a long table with a royal blue cover, with a moderator to the left. They are on a stage in the Great Hall of the U.S. Department of Justice. Behind them is an American flag, a Justice Department flag, and a Health and Human Services flag. Above these is the U.S. Department of Justice seal with an eagle. On the far left is a large silver metal statue of Lady Justice, wearing a toga and holding up both arms.

How Could Olmstead Be Improved?

Jenny: Today, James is an Olmstead success story. He has access to Medicaid. We live in California, a state that pays parents and family caregivers in addition to paying nurses to handle complex medical care.  

We’re able to be here today because Olmstead keeps our family together.

Olmstead means disabled people–like my son–have a civil right to access care in their own homes. Unless they can’t, because the program in their state has a waitlist. 

Wait … civil rights can have waitlists? 

Our life works because James has access to nursing care at home through a Medicaid Home and Community-Based Services (HCBS) waiver program. 

There are disabled children and adults just like my son who can’t access care at home because they’re stuck on waitlists, sometimes for years. 

What’s even worse? Every state has its own set of rules on who can qualify for HCBS waivers. That means some disabled people are locked out of getting care at home because their needs don’t check the right boxes in their state. 

We’re a middle class family—my husband is a teacher and I’m a retired, injured police officer. In California, James qualifies for an HCBS waiver that provides Medicaid. If we ever moved, James would lose it.

Even when disabled people have access to HCBS waivers, low Medicaid reimbursement rates make it difficult to actually find nurses and caregivers. Most personal attendant caregivers make minimum wage or close to it. 

The dignity of disabled people living at home and the dignity of care workers are two sides of the same coin. 

The new federal rules that will require 80 percent of Medicaid dollars to go to the front line workers who are actually providing care is a great start. But we can’t fulfill the promise of Olmstead unless we make sure the Medicaid reimbursement rates are enough to pay caregivers and nurses a living wage. 

When my son lived in institutional care, the system paid more than half a million dollars a year-–no questions asked. Providing him with nursing care at home is dramatically cheaper, but the system isn’t set up to make home care easy. 

Disabled people who want to live at home have to figure out confusing paperwork, navigate a complicated system, and find their own caregivers to make life at home work.  

Olmstead makes life work for disabled people, but we can make Olmstead work better.

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James and Jenny McLelland are members of Little Lobbyists. Jenny is Little Lobbyists’ Policy Director for Home and Community-Based Services.

Little Lobbyist James McLelland (c) and his mom Jeni (r) are seated at a long table with a royal blue cover, with a moderator to the left. They are on a stage in the Great Hall of the U.S. Department of Justice. Behind them is an American flag, a Justice Department flag, and a Health and Human Services flag. Above these is the U.S. Department of Justice seal with an eagle. On the far left is a large silver metal statue of Lady Justice, wearing a toga and holding up both arms.

The U.S. Supreme Court’s Olmstead Decision, a landmark civil rights case for people with disabilities, marks its 25th anniversary this year! In 1999, the Court upheld the right to community integration in the Americans with Disabilities Act (ADA) of 1990. Our disabled loved ones have the right to live and thrive in their homes and communities, where they belong. Home care is a human right. 

To honor the 25th Anniversary of the Olmstead Decision, the Biden Administration held multiple events. On Tuesday, the White House hosted a screening of the short film, Take Me Home, by director Liz Sargent starring her sister Anna, an actress with cognitive disabilities, followed by a discussion with advocates and top members of the Administration about the importance and challenges of community living,and how people with disabilities are part of making positive change. Later in the week, the Departments of Justice and Health and Human Services held a joint celebration that included remarks and panel discussions with leading officials and disabled advocates–including Little Lobbyists James and his mom Jenny McLelland–on the significance of Olmstead and on the Biden Administration’s work to make sure every person with disabilities has the right to live in their own community. 

Disabled activist Emmanuel Jenkins, Vice Chair and Community Relations Officer for the Delaware Developmental Disabilities Council, had this to say: “Without the Olmstead Decision, I would not be sitting in the White House … without that decision I would not be able to work a full-time job … I would not have just celebrated 15 years of marriage … without that decision, I would not be able to elevate that voice [those of people with disabilities].”

Little Lobbyists James, age 13, from California said: “I’m proud to be disabled. It’s part of who I am. … Olmstead means I have a nurse who goes to school with me to make sure I  keep breathing while I’m in class … who comes to my house at night to manage the ventilator to keep me breathing.  Being disabled means that I have to rely on other people – it’s okay to rely on other people for care. I’m here today because I’m an Olmstead success story – I’m getting the care I  need to live my life the way I want to live it. I want to make sure that other disabled people have the same access to the community that I do.”

What was the Olmstead Case About?

Olmstead vs. L.C. & E.W. was brought by two disabled women, Lois Curtis and Elaine Wilson, against the State of Georgia and its commissioner of the Department of Human Resources, Tommy Olmstead. Lois and Elaine had been repeatedly institutionalized, and their suit argued that this was unjustified segregation and discrimination under Title II of the ADA. Lois was the driving force behind the case, repeatedly contacting the Atlanta Legal Aid Society to ask for their help, and in 1995, it agreed. 

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.]

In 1999, the Supreme Court sided with Lois, agreeing that “people with disabilities […] have the right to receive the treatment they need 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. She became a well-known artist with a talent for portraiture. 

What is the “right to community integration”?

Disabled people have been fighting for their community living rights throughout U.S. history, for the right to stay out of institutions, facilities, and asylums. Medicaid itself did not allow in-home care until 1983 when Katie Beckett’s situation caused Congress to finally establish the first HCBS waiver. The ADA of 1990 established community living rights under Title II: “The ADA bans the unnecessary segregation of people with disabilities in a regulation called ‘the integration mandate.’ As a result, State and local governments that provide services to people with disabilities must offer those services in people’s homes and communities—not just in institutions.”

What does this mean for my family?

Under federal law, Medicaid’s HCBS waivers are still considered “optional” services for states, and states continue to make it difficult for disabled people to live in their communities, but progress is on our side. Given the high costs of institutionalization, states are expanding their offerings and beginning to reduce long waiting lists. The American Rescue Plan of 2021 provided additional funding for HCBS, and, as of last year, states have committed approximately $37 billion to such programs. All 50 states now have Katie Beckett waivers for minor children to live at home. 

Little Lobbyist Rob Stone, seated in his wheelchair and wearing his trademark Clark Kent glasses, smiles at the Olmstead White House event. He poses in a doorway with the blue oval seal of the White House and an American flag behind him on a yellow wall.

Many families, though, first qualify for HCBS as their disabled loved ones transition from high school to adult services. While this transition can be emotional and difficult, remember that you or your disabled loved one have the right to live in your community in the most integrated setting appropriate to your needs. If transition coordinators propose something that isn’t right for you or your dependent adult, ask hard questions. Often, school systems will present transition as if entitlements end with high school graduation; however, civil rights are also an entitlement. Remind them of that. Ask about HCBS “self-directed services,” a good option for many people. 

There are 56 State Councils on Developmental Disabilities. Reach out to yours with questions and concerns. The National Association of Councils on Developmental Disabilities (NACDD) has many resources, including tips for advocacy. 

And never give up. As former congressman Tony Coelho–the principal author of the ADA, and a person with a disability–said at the White House, “My philosophy in life is this: give me the right to fail. But in order to do that, give me the opportunity to succeed. And that’s what we all want–nothing more, nothing less. But we want that opportunity to succeed. And we only get that opportunity if all of you in this room work to make it happen. We did not get Olmstead, we did not get the ADA on our own. We got the ADA because of all of you and the rest of us all over the country who have disabilities.” 

What’s Being Done to Ensure My Rights?

Olmstead marks the beginning of enforcement of community living rights for disabled people and the expansion of Medicaid’s Home and Community-Based Services (HCBS) waivers. Since 1999, states have made progress on HCBS: These supports include aides and other staff, job assistance and coaching, medical care, housing options, and funds for equipment and activities. But we have a long way to go.

Disabled advocates and members of the administration agree that there’s a lot more work that needs to be done to fulfill the promise of Olmstead and ensure all people with disabilities can access their civil right to get the care they need in their own homes and communities. 

On the first day of his administration, President Biden mandated that his Administration would be focused on equity. The President has made it clear that he wants to work with Congress to provide the funding needed to end Medicaid waiting lists for home and community-based services—a priority he made a “down payment” on with an investment of $37 billion from the American Rescue Plan. 

In addition to funding, the Administration has taken many actions to expand and improve the rights of people with disabilities. Some of these actions include:

• American Rescue Plan: $60 Billion invested in the care economy, including over $30 billion for home and community-based services (HCBS) 

• Multiple Executive Actions to improve equity and access to care, including an Executive Order on Diversity, Equity, Inclusion, and Accessibility in the Federal Workforce, and a set of sweeping Executive Actions to Improve Care

• Established new rules to ensure access to Medicaid HCBS

• Department of Transportation established the Airline Passengers with Disabilities Bill of Rights, created new rules for how airlines handle wheelchairs and to make airplane bathrooms accessible, and provided $1.75 billion for states to make public transit stations accessible

• The Department of Justice established a new strike force to enforce Olmstead and expedite case resolution that has helped 500+ adults and children in every state

• Established the Direct Care Workforce Strategies Center and actions to address the care workforce crisis 

• Invested $212 Million to Expand Affordable Housing Options for Persons with Disabilities

• Expansion of Certified Community Health Clinics to improve access to mental and behavioral health services 

• Updated Section 504 of the Rehabilitation Act, which protects people with disabilities from discrimination, for the first time in 50 years. 
  

You can find additional resources and learn more about the actions the Biden Administration has taken to enforce Olmstead and expand access to community living for all people with disabilities using the links below:

• From the Department of Justice Civil Rights Division:
  https://www.ada.gov/topics/community-integration/

• From the Department of Health and Human Services:
  https://www.hhs.gov/civil-rights/for-individuals/special-topics/community-living-and-olmstead/index.html

• From the Administration for Community Living:
  https://acl.gov/news-and-events/events-and-observances/olmstead-anniversary

Preview video of TAKE ME HOME: Anna peeks around a doorway in her home. Video includes links to purchase the short film.

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Jeneva Stone is the Little Lobbyyists blog manager, and Laura Hatcher is the Little Lobbyists Communications Director.

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