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 pose in a row with the U.S. Capitol Building in the background. It’s a beautiful day, and they wear colorful clothing. The children are very young. Some use adaptive strollers, and some stand.

This week marks the 50th anniversary of the Rehabilitation Act of 1973, which opened doors to jobs, education, independent living, and much more for people with disabilities. The Act also established standards for accessible communication and information technology. 

The Rehab Act (as it’s often called) is the foundation for civil rights for people with disabilities in the U.S., and at its heart is Section 504, which prohibits discrimination on the basis of disability “under any program or activity receiving Federal financial assistance.” Disability rights activist Judy Heumann, who was instrumental in the fight for the Rehab Act, reacted this way, “I read the sentence over again, took my glasses off, rubbed my eyes, and read the sentence one more time … This sentence acknowledged that the way we were being treated was actually discrimination.” 

Until the Rehab Act passed in 1973, people with disabilities had been excluded from the protections of the Civil Rights Act of 1964. No one knows who inserted civil rights language into a bill that had been primarily focused on disability employment, but it changed history without amending the Civil Rights Act. Nonetheless, it would take four more years and a famous 26-day sit-in by disabled activists in the U.S. Health, Education and Welfare offices in San Francisco before Section 504 was finally implemented. 

What’s the Difference Between Section 504 & the ADA?

While most people think of the Americans with Disabilities Act of 1990 (ADA) as the first law that established civil rights for people with disabilities, Section 504 predates it and lays the groundwork for the ADA. 

The basic difference between the two laws lies in how each law guarantees rights. Section 504 prohibits discrimination against people with disabilities who participate in programs funded by the federal government–among these are Medicaid and Medicare, public schools, federal employment, federal buildings and public housing. The ADA builds on 504, extending civil rights for disabled people to everyday life in both the public and private sectors, such as businesses and other parts of government. 

In addition to launching the Americans with Disabilities Act, 504 further impacts the lives of disabled people through the Individuals with Disability Education Act (IDEA) that grants disabled students the right to inclusion, and the U.S. Supreme Court’s Olmstead Decision which determines that disabled people have the right to choose where they live.

What Does This Mean for Our Families Today?

The fight to have the 504 regulations made into federal law was long and bruising–at the time, the very idea of considering people with disabilities citizens with equal rights was tremendously controversial. Businesses and others tried to get rid of Section 504 after the Rehab Act was passed, claiming it would be too expensive and difficult to adhere to. Although disability rights prevailed and 504 remains law, even today, we are still fighting for the rights of people with disabilities to live where they choose, receive basic medical care, and prove that disabled lives have equal value. 

Judy Heumann poses with Little Lobbyist Rob Stone in a bookstore. There are bookshelves behind them, and Judy is signing a copy of her memoir for Rob.

In the 50 years since it passed, Section 504 has never been revisited or revised. Since 1973, though, our society has changed dramatically: the personal computer has become an essential part of everyday life; the internet is available to the public; health care has become far more complex and sophisticated; our disabled children are included in public school; progress has been made in closing institutions; and more and more disabled people live, work, and play in their communities. 

That’s why, this month, the Biden Administration announced plans to revise and strengthen the 504 regulations for the U.S. Department of Health and Human Services. Because it’s about time, and care can’t wait! The legal and social changes of the last 50 years need to be aligned with Section 504.

When the federal government wants to issue new or change existing regulations to current law, it must post a Notice of Proposed Rulemaking (NPRM) in the Federal Register and give the public time to comment. This NPRM on Section 504 makes changes to improve or clarify key areas of nondiscrimination in health care and human services, including:

• Discrimination in medical treatment, especially organ transplant and public health emergencies;

• Accessibility of medical equipment, including exam tables, weight scales, and mammogram equipment;

• Web, mobile app, and kiosk accessibility, so that disabled people can equitable access medical care and check in for appointments;

• Child welfare programs, to prevent discrimination against disabled parents and disabled foster parents;

• Community integration, to ensure that disabled people are able to live in their communities as established by the U.S. Supreme Court’s Olmstead Decision of 1999; 

• Value assessment methods, to prevent the devaluing of disabled lives when physicians and insurers determine who is eligible for treatments, operations, and medications.

We thank the Biden Administration for making progress on civil rights for people with disabilities, and we look forward to these crucial updates to Section 504.

Can you envision a world in which a wheelchair user can be weighed every time they go to the doctor? Or get a mammogram easily? One in which waiting lists for Medicaid programs are a thing of the past? Or one in which disabled lives are always valued the same as nondisabled lives? These updates to Section 504 can help make these dreams a reality.

The Biden Administration is asking for our help to make the proposed changes as effective as possible. If you are a member of the disability community, your lived experience can provide much-needed insight. If you would like to be a part of improving the lives of disabled people and their families, please read through the NPRM, and, if you have a comment or suggestions, submit it at this link before November 13, 2023.

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Jeneva Stone is the Little Lobbyists blog manager. If you have an idea for the blog, or would like to write a post, contact her at: jeneva@littlelobbyists.org!

A photo of some of the supplies necessary for enteral feeding. Depicted are a g-tube “button” or “peg,” syringes (catheter tip, slip-tip, luer lock), a feeding bag, and g- and j-tube extension sets. The equipment is made of translucent plastic, with white, aqua and purple accents. These are all “legacy” supplies. Each of these has an ENFit version, but the Stone family does not have all of these pieces yet.

My son Rob is a 25-year-old artist and activist. He’s survived and thrived in his community because he has had access to enteral (or “tube”) feeding for all of his nutrition, hydration, and medication needs since the age of two. Tube feeding isn’t shameful; it’s just another way of eating, and Rob has grown into a healthy adult because of this life-saving adaptation. 

Yet, Rob’s feeding disability leaves him vulnerable. Unlike his peers, Rob can’t buy disposable utensils at the market in a pinch, nor can he eat with his fingers if he has to. Rob eats and drinks using a system of medical feeding bags, extension sets, and specialized syringes covered by insurance, and available through medical suppliers. His life depends on the availability and compatibility of his supplies.

Two weeks ago, Rob and I first heard of the ENFit transition when our medical supplier told us his “legacy” enteral equipment would no longer be available. Many other families found out this fall when they began receiving mixed lots of supplies: ENFit and their usual. This is creating mind-boggling problems for tens of thousands of American families.

Centers for Medicare and Medicaid Services (CMS) data from 2013 estimate there are 189,036 pediatric and 248,846 adult enteral users in the United States, for a total of 437,882 people.

As of 2020, the Feeding Tube Awareness Foundation estimated that ⅔ of U.S. enteral users had successfully transitioned to ENFit products, leaving ⅓ of users yet to transition. If you’re one of the remaining 146,000 families who are just learning about ENFit, you’re not alone. 

ENFit is an effort to standardize all connectors in enteral feeding systems, for two good reasons:

1. To reduce medical errors: the variety of syringes and connectors available (luer lock, slip-tip, catheter-tip, and Christmas tree) fit both tube feeding equipment and many other medical systems, including IV, catheters, tracheostomy, etc. 

2. To prevent accidental disconnection of feeding tubes, which can easily happen with the legacy connectors, and to reduce leaks.

Rob Stone at a neighborhood party. Rob is seated in his wheelchair and wearing a light blue wheelchair cape. His cheek has been painted with a Rolling Stones logo, the red and white lips and protruding tongue.

In 2006, hospitals, families, suppliers, and others became concerned about medical mistakes made with tube-feeding connectors that had resulted in deaths. A trade organization called the Global Enteral Device Supplier Association (GEDSA) was formed to study the issue. GEDSA recommended standardizing all enteral supplies, and an awareness campaign began in 2014, with a planned transition to take place between 2015 and 2018. The Oley Foundation and the Feeding Tube Awareness Foundation were instrumental in getting the initial word out to families. The Oley Foundation has an archive of articles about the ENFit transition. The online resource Complex Child has a great article on ENFit’s benefits. 

However, not all families are active with these organizations, nor do they attend conferences on enteral feeding. Many families simply rely on Medicaid, their private insurer, and/or their medical supply company to keep them informed. 

Between 2018 and 2022, the ENFit transition stalled, for reasons that are not clear. Then in mid-2022, the legacy supplies families relied on began to vanish, because manufacturers discontinued them, apparently without adequate advance notice to suppliers or families. 

The sudden disappearance of legacy enteral supplies is causing serious problems for many families, right now, without adequate support or assistance from GEDSA or any other organization, including the FDA and Medicaid. Some families are receiving only some ENFit components, and not others. Many families have reported that their medical supply companies are refusing to provide ENFit syringes, which makes it impossible for families to administer vital medications, or, in some cases, hydrate or feed their loved ones, as ENFit and legacy supplies are not compatible.

Giving medication through a syringe sounds relatively easy, but if you are an enteral user, your syringe, your extension set, your medication bottle dispenser cap, and, if you use one, your medication delivery bag must all have compatible connectors. 

Many suppliers are claiming that syringes are the responsibility of pharmacies, which, you should know, is not true. Both private insurers and Medicaid pay suppliers for a daily enteral “package,” which is supposed to include syringes–although the number of them is not specified. If you aren’t getting syringes, your medical supplier may be cheating Medicaid or your insurance company in order to increase profits. 

What is even more alarming? Many manufacturers of medical supplies are using the ENFit transition to price gouge and profiteer. On Amazon, ENFit syringes are selling for up to 10 times the cost of luer lock, slip-tip, or catheter tip syringes. It is difficult to find syringe adaptors online, and prices for these are excessive, as much as $100 per adaptor. 

While families can purchase some ENFit and ENFit-adaptor products in bulk at Health Care Logistics (a wholesale company), bulk purchase is expensive! While nozzle adaptors are only $0.46 apiece on that site, you must buy 100 of them, spending $46. The same goes for bottle adaptors for medications, which run over $130 per 100. You can research more products here, but most are not available for sale to families. Enteral feeding bags and extension sets are not typically available for direct purchase, either.

Besides, many of our families do not have that kind of cash–disability is expensive enough as it is in our society, and the net result of the ENFit transition? Many families are stranded with no immediate options other than to pay through the nose for adaptive equipment, all while fighting with suppliers to ensure that insurance-covered and compatible products are actually delivered. Our loved ones need their medications, food, and hydration now; they cannot wait several months while this situation is resolved.  

What can you do? You can contact your insurance company or State Medicaid authority to request information on the availability of ENFit supplies, as well as the number and type of syringes that are supposed to be provided by your supplier. You can also access resources at the Oley Foundation and the Feeding Tube Awareness Foundation to familiarize yourself with ENFit products. You can contact GEDSA and ask them how ENFit adapters can be made available cheaply for families who need them, as well as their plans for addressing profiteering by manufacturers and suppliers, the entities GEDSA represents.

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Jeneva Stone 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. 

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.

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!

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.

Little Lobbyist Simon Hatcher poses in front of the U.S. Supreme Court steps with his dog. [image description: A light-skinned disabled boy poses in his wheelchair in front of the white marble steps of the U.S. Supreme Court. The Court’s Corinthian columns and can be seen in the background. The boy holds the leash of his dog, a large curly white-haired breed whose long pink tongue is sticking out.]

The Senate and the U.S. House of Representatives have voted to allow legislators to begin drafting President Biden’s $3.5 trillion “human infrastructure” package through budget reconciliation. 

The Biden Administration has asked for $400 billion for Home and Community-Based Services (HCBS), which are part of the federal Medicaid program, to be included in the $3.5 trillion final package. To this end, Senator Casey and Representative Dingell introduced the Better Care Better Jobs Act, which designates funding to reduce or eliminate waiting lists for HCBS, increase wages for home health aides and direct support professionals, and allow hundreds of thousands of children and adults with disabilities to live where they choose — outside of institutions. 

Home and Community Based Services, known as HCBS, are skilled supports – aides, home health care, and skilled nursing services, etc. — that enable disabled people to live in their own homes and communities, contributing their talents and skills, working, volunteering, and learning. HCBS provide the human infrastructure for disabled children and adults, and their non-disabled family members, to be fully included as citizens, just as roads, bridges, airports and public transportation help people connect, get to work, travel for business and pleasure, and allow goods to be delivered across the country. 

HCBS is a critical part of  Medicaid, but it can be difficult to obtain and is not available to everyone who needs it. There are currently over 800,000 people on decades-long waiting lists for HCBS, and far more people qualify who aren’t even on waiting lists yet. What’s more – people who qualify are guaranteed care in an institutional setting, but not in their own homes – which is far less expensive and what most would prefer.

So, what’s the problem? What’s the history here?

Medicaid 101

Medicaid was established by President Lyndon Baines Johnson (LBJ) in the Social Security Act of 1965, part of his Great Society initiative, perhaps the greatest human infrastructure achievement of the 20th century. Medicaid was created to provide health insurance and services to the poor, elderly, and/or disabled. The 1965 law also entitled people who needed 24/7, or nursing-level, care to receive that care in an institutional setting without a waiting period. This is frequently referred to as Medicaid’s “institutional bias.”

Disability activists Mia Ives-Rublee (center, Director of the Disability Justice Initiative at the Center for American Progress) and Elena Hung (right, Co-Founder of Little Lobbyists), two young disability activists, and two dogs in front of the U.S. Supreme Court. [image description: Left to right are seated on the pavement a large white curly-haired dog, a light-skinned boy with glasses, a large white short-haired dog, a light-tan skinned woman with short black hair, a light tan-skinned young girl with black pony tails, and a light-tan skinned woman with black hair pulled back. In the background is the facade of the U.S. Supreme Court.]

But, as we know, nursing homes and other facilities cannot duplicate the love and support of friends and families, nor opportunities for growth, education, and community engagement. The Covid-19 pandemic has also shown us how dangerous institutional care really is, a point disability activists have been making for decades. Home care is also less expensive than facility care. 

Until 1983, Medicaid did not provide in-home care. Throughout the 1950s, ‘60s, and ‘70s, disability and parent activists fought for the rights of disabled people to live in their communities. The independent living movement was founded by Ed Roberts, and Judy Heumann fought for the implementation of Section 504’s antidiscrimination provisions. The Arc of the United States was founded by parents to help keep children with intellectual and developmental disabilities at home. 

A tipping point came in 1981, when the story of Katie Beckett came to the attention of President Ronald Reagan. Katie was a 3 year old girl who had developed disabilities after a brain infection. She was forced to live in a hospital for three years because she needed a ventilator and Medicaid would not pay for her care to be provided at home. 

President Reagan was moved to act, and with the support of the president, the disability rights movement was able to make progress toward providing home care for medically complex persons with disabilities. In 1983, Congress amended the Social Security Act to allow states to “waive” Medicaid’s institutional care restrictions to provide home care. For dependent children with disabilities, family income could also be waived. Congress considered these “waivers” to be demonstrations, meaning states could develop their own programs to do what worked for them.

The result is our contemporary suite of Home and Community-Based Services programs, part of Medicaid’s state-federal partnership. All states now have some form of a “Katie Beckett waiver,” which allows medically complex infants and children to be cared for in their homes. Many states also have Autism waivers, some have a waivers specific to people with rare and expensive medical conditions, and others have general developmental disability waivers. Each state is allowed to limit how many people can receive services and to establish waiting lists for services. 

Because of this variability from state-to-state, Medicaid waivers for HCBS have a patchwork quality. Who’s eligible for services depends on where you live, and if you move between states, you lose your services and have to reapply. 

The result is that American citizens with disabilities have the right to funds for health care in an institution, but NOT to receive funding for health care in their own home.

Home and Community Based Services are a Civil Right

With the passage of the Americans with Disabilities Act (ADA) in 1990, and the 1999 U.S. Supreme Court Olmstead Decision, the disability community achieved clarity: living in the community of your choice is a civil right. 

Yet decades later, this civil right is still not attainable for hundreds of thousands of people with disabilities, and disability rights advocates continue to fight to expand and improve access to HCBS. States balk at the “cost” of transitioning disabled people out of institutions and into their communities as they continue to operate under the false assumption that institutional care is “cost-effective.” States can still shirk the Olmstead Decision by claiming they don’t have enough money to let everyone who wants to live in the community of their choice. 

Caregiving IS Infrastructure

Nine young Little Lobbyists pose on a tree-lined Washington D.C. street with the U.S. Capitol building in the background. [image description: Nine young children with various skin tones pose on a city street with varying shades of pavement (grey, dark red, tan). Some of the children are in adaptive strollers with medical equipment, others stand. They are all goofing off, adorably.]

This is why the disability community, our families, friends and non-disabled allies need Congress to pass the Better Care Better Jobs Act to provide full funding for HCBS. We need to eliminate waiting lists, establish new state programs, and fulfill the integration mandate of the ADA. 

We need states to understand how critical it is to support families in their own homes and communities. The Better Care Better Jobs Act will create 516,000 new good paying care jobs to bolster the caregiving workforce, which is currently in crisis due to our country’s rapidly aging population and the ravages of the pandemic. It will also allow more than 1.1 million unpaid family caregivers to return to the workforce, dramatically reducing the financial impact of caregiving on families.

Most of all, we need to demonstrate that it is entirely possible for LL of us to survive and thrive outside the walls of institutions; contributing our skills, talents, and tax dollars to America.

We are the face of human infrastructure, and we are deserving.

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Jeneva Stone is the Little Lobbyists blog manager. She is also a writer. Laura LeBrun Hatcher is the Design and Communications Director of Little Lobbyists, a creative consultant and design educator.

Rob and his disability rights button collection. [image description: A business card on a brown wood table shows a man with light skin sitting in a wheelchair on a grassy hill overlooking the city of Washington DC. He wears sunglasses and a Washington Nationals baseball hat. Four round advocacy pins are placed near the business card: “Meaningful Work Community Inclusion Transcen.org; Little Lobbyists (with their star child & heart logo), “Disability Rights are Civil Rights”; “Health Care Voter.”]

I still remember my first event with Little Lobbyists, a family-led group advocating for kids with complex medical needs and disabilities. My son Rob wasn’t with me that day--he was enjoying one of his last precious days of public school, which he loved. I’d gone to Capitol Hill on his behalf to check out Little Lobbyists’ advocacy efforts. Rob was transitioning to adult services, and he’d decided he wanted to be a disability and health care advocate (as well as a poet and an artist). Would Little Lobbyists be a good fit for him? 

After visiting Hill offices, I went to a reception for the Disability Integration Act, which had just been introduced in Congress. Walking into the wood-paneled conference room beneath the Capitol, I saw a room full of passionate and excited disabled people, and I thought, “Wow! Here are our people.” 

And that’s my first point: Disability is shared community, history, and culture. Rob experiences the thrill of belonging every time he meets another wheelchair user, a person who communicates by augmentative technology, a person who identifies as Autistic, Deaf, Neurodiverse, and/or chronically ill. Rob is nonspeaking, and I see his joy in his body language: his face lights up, his shoulders straighten, and he sometimes kicks his legs with glee. 

Under the Individuals with Disabilities Education Act (IDEA), Rob had access to the public school system and benefited from an inclusive education; however, as he reached high school, he was less and less included in the regular classroom because alternative “special” education classrooms could still be used by administrators to fulfill the IDEA’s “least restrictive environment” clause. 

This narrowing of possibility in public education as disabled youth reach adulthood speaks volumes about how our society expects “special needs” persons to participate in the real world--society has no expectations that they will live inclusive and self-directed lives. Disability rights is all about changing that.

My second point: When we say people have “special needs” instead of disabilities, we’re emphasizing “needs” instead of “rights.” In fact, disabled people have rights granted to them by law, including the Americans with Disabilities Act (ADA). Using “special needs” gives others the wrong impression about our children. “Special” needs don’t have to be equal, while “rights” carries that expectation. “Special” needs aren’t the same as everyone else’s needs--they’re different, segregated, and subject to being met after the needs of the majority are satisfied. 

Taking a page from Elena Hung about her own daughter Xiomara, Rob’s needs aren’t “special.” His needs are the same as everyone else’s: to breathe, to eat, to socialize, to get around, to be educated, and to choose his own path in life. His life has value and, just like everyone else, disabled or nondisabled, Rob requires varying levels of support, accommodation, and medical intervention to be an equal member of his community. 

Looking back on the 24 years of Rob’s life, I can’t remember not using the word “disabled” to describe him. That’s who he is. Being disabled isn’t “less than” or “incapable.” It isn’t shameful. It’s just another way of being in the world and living your life and expressing your truth.

Rob at a recent state park outing. [A young man with light skin sits in his wheelchair in front of a colorful wall mural with a Maryland State Map, beneath which is written “Nothing is real until it is experienced.” There are also painted images of a turtle, a crab, and a squirrel visible.]

I spent two decades advocating for and with Rob for his rights to be included in his school and in his community--asking family, friends, neighbors, as well as medical and social service workers to be inclusive and prioritize accessibility for Rob. I wanted to model those expectations for Rob so that he’d learn to have them himself. We learned that it is completely possible to have inclusive vacations, activities, and social gatherings. Sometimes we had to do things differently, but we still had fun. For instance, when we visit my family in Vermont, we spend time at museums and accessible tourist attractions, rather than hiking or skiing. 

If you’re still using the term “special needs” to describe your child, let me ask you: Are you holding onto fears and stigma society instills in many of us about people with disabilities? Are you worried that if your child identifies as disabled, they will be excluded? If so, look at Rob. He’s living his best life--he’s loved, supported, and included. And he’s disabled and proud of it. 

Rob uses an augmentative communication device, and one of the things he most likes to say is “I’m fighting for my rights.” People with special needs are those we shelter, protect, and frequently exclude when their needs are deemed too “special” to meet. Disabled people have civil rights protected by the ADA and multiple U.S. Supreme Court cases, including the 1999 Olmstead Decision. Disabled children need to grow up to be disabled adults and advocate for themselves. Be like Rob. Tell your family and friends you’re the parent of a proud, disabled child.

(And, yes! Little Lobbyists has been a great fit for Rob, and could be, too, for you and your family!)

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Jeneva Burroughs Stone is the Blog Manager for Little Lobbyists. She is also a writer.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rob and his sister as children, waiting for the school bus.

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 May, the U.S. House of Representatives passed a third COVID relief bill, the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, which would provide additional funding for HCBS to reduce waiting lists, and crucial support for home health care workers and direct support professionals. The U.S. Senate is just beginning their own discussions on a third COVID relief bill. You can help by contacting your senator and letting them know it’s critical that they include support for the disability community from the HEROES 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.

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

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

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

3. 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. 

We must think of HCBS as a work-in-progress and build upon the vital work of disability advocates over the last 40 years. We hope to inspire more advocacy on your part. In future posts on HCBS and LTSS, we’d like to consider the following questions: 

1.     How can I keep my young child at home?

2.     How can I keep my school-aged child in their community?

3.     How will my child be able to grow up and live independently?

Ask your legislators about HCBS! Give them examples of how the world could be a better place for our families!

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