Posts in Know Your Rights
Know Your Rights: The Community Integration Mandate (by Jeneva Stone)

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 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. 

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

Medicaid, Know Your Rights, HCBS, Family Advocacy, "101" SeriesJeneva Stone
25 Years of Olmstead Rights: James & Jenny McLelland’s Story

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.

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

"101" Series, Family Advocacy, Federal Issues, HCBS, Know Your Rights, MedicaidJeneva Stone
Know Your Rights: The Olmstead Decision (by Jeneva Stone & Laura LeBrun Hatcher)

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:

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:

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

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

"101" Series, Federal Issues, HCBS, Know Your RightsJeneva Stone