Myths and Facts

MYTH: The bill doesn’t address Medicaid’s institutional bias.

FACT: Although the bill does not change the Medicaid program itself, it gives individuals who are institutionalized or at risk of institutionalization an enforceable civil right to live in freedom. It would require state Medicaid programs to ensure that people not only have a right to live in the community, but also to be fully integrated and be able to lead an independent life. The bill goes beyond Medicaid and extends the protection to non-Medicaid providers of Long Term Services and Supports (LTSS), including insurance providers. That’s why we say we are fighting for Disability Freedom.

MYTH: The Supreme Court affirmed that Lois Curtis and Elaine Wilson had a right to live in the most integrated setting, so we don’t need another law.

FACT: First, although the Supreme Court’s decision affirmed that Title II of the Americans with Disabilities Act required states to provide Long Term Services and Supports in the most integrated setting, the decision was not a full endorsement of Disability Freedom, and it is limited in very real ways. The Latonya Reeves Freedom Act clarifies and strengthens the Olmstead integration mandate; it makes some significant changes to accomplish that. These changes include:

- Creating a direct and clear statutory requirement for the community integration of Americans with Disabilities in regard to the provision of LTSS;

- Adding managed care organizations as directly covered entities;

- Establishing a new, stronger definition of “community-based”;

- Reducing the threshold of protection from “at serious risk of institutionalization” to “at risk of institutionalization”;

- Eliminating the treating professional role in determining whether community integration is appropriate for the individual with an LTSS disability;

- Establishing specific prohibitions addressing systemic discrimination which is not only permissible under current law, but rampant across the country (waiting lists, restrictive eligibility criteria, service gaps, cost caps, and inadequate rates);

- Requiring public entities to address the need for affordable, accessible, integrated housing that is independent of service delivery;

- Eliminating the fundamental alteration defense so that public entities will be required to modify their programs to assure that people with disabilities can receive LTSS in the community and can lead an independent life;

- Requiring public entities and MCOs to engage in a self-evaluation that has substantial public participation;

- Requiring public entities to develop and implement a transition plan with milestones or benchmarks; and

- Establishing the ability to be provided legal representation and awarded punitive damages.

Finally, using this logic, advocates would have argued that we didn’t need Title II of the Americans with Disabilities Act because we already had Section 504. Clearly that was not the case.

MYTH: The Olmstead decision isn’t at risk.

FACT: Only one member of the court who decided the Olmstead decision remains on the Supreme Court: Justice Clarence Thomas. Justice Thomas did not agree with the court’s finding in Olmstead and published a dissent which outlined how he would reverse the decision. Even if the Olmstead decision isn’t seen as a primary target of conservative activists, we should have serious concerns if a case gets to the Supreme Court which is why we need to establish these protections in statute now.

Congress recognized the potential threat to same sex marriage and took bipartisan action to enact the Respect for Marriage Act. Freedom is as fundamental as marriage. The Latonya Reeves Freedom Act is bipartisan legislation which – if passed – would protect and expand the right to community integration of people with LTSS disabilities.

MYTH: Most Disabled people can’t get a lawyer so the Latonya Reeves Freedom Act wouldn’t change anything.

FACT: Access to legal services is a serious problem with enforcement of our civil rights laws, including the Americans with Disabilities Act which also encompasses the rights afforded to us by Lois Curtis and Elaine Wilson in Olmstead. The situation is worse for Black and Indigenous People of Color (BIPOC) with disabilities. The Latonya Reeves Freedom Act recognized this concern and addressed it by authorizing the court to appoint an attorney for Disabled individuals who have been discriminated under the act. The courts may also authorize the commencement of civil action without the payment of fees, costs, or security. This is found in Section 8(a)(3) of the bill.

Additionally, the legislation allows individuals to collect actual and punitive damages. Adding damages is a way to ensure compliance with the law. When States or managed care companies strip Americans of their Constitutionally-protected, inalienable rights to Life and Liberty, they should be penalized. The opportunity to secure an award for punitive damages also is a tool for securing legal representation as it increases the payment the attorney may receive for their work on a case. This is particularly true for individuals who have experience significant discrimination, helping ensure that they are able to benefit from the legislation.

MYTH: The Latonya Reeves Freedom Act doesn’t help people with mental health disabilities.

FACT: The legislation is broader that Medicaid-based bills, so it is able to address the needs of people with mental health disabilities institutionalized in facilities that are not funded by Medicaid.

Additionally, the legislation includes a broad definition of “Instrumental Activities of Daily Living” (IADL) to ensure that people with mental health disabilities receive the services and supports they need to be integrated in the community and lead an independent life. These include communication and interpersonal skills, such as forming and maintaining interpersonal relationships and securing opportunities to participate in group support or peer-to-peer support. Assistance with IADLs also includes support provided to an individual by another person due to behavioral symptoms, or mental or emotional disabilities, including support to help the individual identify and set goals, overcome fears, and manage transitions as well as providing reassurance to the individual. These definitions were crafted with significant assistance from the Bazelon Center for Mental Health Law and the National Coalition for Mental Health Recovery.

Additionally, the Latonya Reeves Freedom Act also requires that people with LTSS disabilities be provided assistance in addressing their “short-term, intermittent or emergent” LTSS needs. Hospitals are already defined as institutions under the law. Therefore, people with mental health disabilities at risk of institutionalization, including in a hospital, because intermittent assistance in responding to emergent situations or crises is not provided would be protected by the LRFA.

MYTH: People just put Latonya Reeves’s name on the bill. She didn’t do anything important and didn’t even support the bill.

FACT: This is untrue and wildly offensive. Anyone who has been with ADAPT over the decades fought for Disability Freedom alongside Latonya Reeves knows the truth. Rather than read Latonya’s story, experience her telling it for yourself:

MYTH: The Latonya Reeves Freedom Act doesn’t do anything for 10 years.

FACT: There has been a lot of misinformation being shared about the bill, including this concern. Here is why the concern is unfounded:

1. There is no language in the bill that establishes an effective date at some point in the future after the bill is signed into law. When the bill is signed into law, it becomes law. Although some parts of the bill define regulations which would need to be promulgated, the fundamental parts of the bill, including the definition of discrimination and the right to take legal action are in the statute itself. That means an individual would have the rights afforded under this legislation immediately. As an example, an individual who is living in the community but at risk of institutionalization because of state budget cuts or a reduction in hours by a managed care organization would be able to take immediate action under the law to protect their freedom. No effective date was included because the legislation strengthens the rights people have under Title II of the Americans with Disabilities Act. Including an effective date would therefore undermine the already established rights.

2. The bill also requires that each public entity and each LTSS insurance provider prepare a self evaluation and evaluate services, policies, and practices that do not or may not meet the requirements of the bill and make any changes to services, policies, and practices that are required to meet the requirements of the act. That means if a state or LTSS insurance provider needs to make changes in its Medicaid policies, it needs to do so as part of their completed self evaluation. This is the same approach that was used for the Americans with Disabilities Act.

3. The bill does acknowledge that some changes by public entities need to happen over time. For example, a state cannot immediately create all of the housing needed to support the community integration of everyone in their institutions. Consequently, the bill gives public entities a transition planning period that may be as long as ten years to make these changes. Even so, the bill requires that public entities make these changes “as soon as practicable”. The language “as soon as practicable” means as soon as possible and practical taking into account all of the facts and circumstances in the individual case. Consequently, states are not given a ten-year free pass to institutionalize people with disabilities and an individual would still be able to make the case that a state was not meeting the requirements of the law if it was not taking action as soon as practicable. Conversely, the language gives states the ability to address these bigger issues over time.

4. The bill includes a process for ensuring advocates can impact the self evaluations and transition plans. Unlike “Olmstead Plans” or Medicaid State Plans that can be done without significant public involvement, the Disability Integration Act includes language ensuring that advocates are involved in the creation of the Self Evaluation and Transition Plan. This formalizes the process advocates can use to identify issues and establish state priorities and timelines.

5. Finally, to keep the compliance efforts moving forward during their transition plan, the bill requires public entities to publicly report on their progress annually. This reporting gives advocates the tools we need to hold states accountable.

MYTH: Disabled Americans have a Constitutional right to live in freedom.

FACT: Although individuals have argued that Disability Freedom is a Constitutional right, the matter was never actually addressed by the Supreme Court. Although we make the case that the freedom and liberty of individuals with LTSS disabilities should be protected by the Constitution, as a legal matter that remains an open question.

MYTH: This bill doesn’t help Disabled people in BIPOC communities.

FACT: Disability Freedom is underpinned by a number of different systems, not just Medicaid LTSS. As examples, the availability of affordable, accessible, integrated housing and transportation are critical for people with disabilities, including those with LTSS disabilities to live in freedom and be integrated in society. The lack of this critical infrastructure significantly impacts the ability of BIPOC with disabilities to live in freedom. Research has demonstrated that BIPOC individuals with disabilities are more likely than their white counterparts to be institutionalized because they are less able to access home and community based services, housing and transportation. Legislation providing access to Medicaid Home and Community Based Services without addressing those other barriers (housing and transportation) will simply reinforce a structurally racist system where BIPOC individuals with disabilities will continue to be institutionalized while more privileged individuals are able to access services. That’s why the Latonya Reeves Freedom Act requires states and other public entities to establish a comprehensive plan which includes transportation while defining a failure to provide sufficient affordable, accessible, and integrated housing to people with LTSS disabilities as a form of discrimination under the law.

MYTH: Republicans won’t support a civil rights bill supporting Disability rights and freedom.

FACT: First, there is a long history of bipartisan support for disability rights. Although he had vetoed two previous versions of the bill, President Nixon signed the Rehabilitation Act of 1973 into law, which established the statutory authority for Section 504. In 1990, President George Bush signed the Americans with Disabilities Act into law.

This legislation was introduced by Republican Representative Chris Gibson (R-NY) in the House during the 114th Congress as the Disability Integration Act. Representative Sensenbrenner (R-WI) then introduced the bill in the 115th and 116th Congresses. During the 116th Congress, 17 Republicans signed on as cosponsors of the bill.

Very conservative Republicans have cosponsored this legislation. These include Rep. Ken Buck (CO), Rep. Gregg Gianforte (MT), Rep. Lamborn (CO). Rep. Cathy McMorris Rodgers (WA), Rep. Stephanik (NY), Rep. Tipton (CO), and Rep. Don Young (AK). In this Congress, seven Republicans in the House have signed on as cosponsors of the Latonya Reeves Freedom Act (as of July 21, 2023).

MYTH: Members of Congress are just cosponsoring the bill to placate activists. It doesn’t mean they support the bill.

FACT: It seems very presumptuous of people to say this, unless it is the members of Congress themselves. For the record, cosponsors make a bill more attractive and show that it has support in Congress. Since only about 4% of bills ever become laws, having lots of cosponsors is an important way to make a bill stand out. For individuals working a bill, the number of cosponsors is a proxy for determining support. It allows people to identify whether their member of Congress supports an issue and would vote on it. Members of Congress who have not supported the bill just didn’t sign on as supporters.

It is true that Congressional leadership, like committee chairs, can initially block a bill from moving forward, but Congress has established rules to bypass an obstructionist chair. For example, a rule in Congress says that a bill that gets and keeps 290 or more cosponsors for a period of 25 legislative days gets a second chance to be voted on. It can be placed on a “Consensus Calendar” if the sponsor submits a motion in writing to the House Clerk asking for that. Almost every week, the Speaker has to schedule at least one item from the Consensus Calendar for consideration. There are other mechanisms as well. All depend on the number of cosponsors a bill has.

MYTH: LRFA would force Disabled people out of institutions.

FACT: States are only required to ensure that people have a choice to live in the community. The bill is careful to ensure that individuals are only provided community based LTSS if that is what the individuals wants. The Latonya Reeves Freedom Act does not force anyone who wants to be in an institution into the community. In fact, the legislation specifically states that community-based long-term services and supports are provided only if the individual with an LTSS disability “selects such services and supports.”

Additionally, this myth has been so pervasive that at the request of advocates for community integration, a construction clause was added ensuring that the bill shall not be interpreted as requiring “an individual with an LTSS disability live or receive services or supports in a more integrated setting if the individual chooses a less integrated setting. This is found in Section 4(d)(1)(C).

MYTH: We have to choose between getting a civil right and reforming Medicaid and the LTSS system.

FACT: That’s absolutely untrue. In fact, we need to coordinate these efforts. Failure to do so could have serious consequences. For example, some policy initiatives was the federal government to take full responsibility for Medicaid. If we cut states out of the system altogether, then we wipe out the protections from Olmstead which is an interpretation of Title II of the ADA. Other policies want to invest the power to determine what LTSS services will be provided. Individuals who need a specific service won’t be protected. We can’t let that happen.

MYTH: People with significant disabilities need to be in institutions.

FACT: Untrue. As Latonya demonstrated, you may not be able to get what you need where you are, but someplace in the US you can live in freedom. We do need to recognize that a lot of people – even people in the Disability Community itself – have some ableist ideas about people who are institutionalized. We need to think about what that means. If our movement accepts that SOME of Disabled people “must” be institutionalized or “can” be institutionalized against their will, we are agreeing that it is permissible to deny Disabled people of their rights to Life, Liberty and Freedom! The policy discussion is just who loses their rights and where that line is drawn. Generally speaking, those that have said legislation like this is not needed live comfortably away from that line. We need to consider what that message says to more significantly Disabled people or BIPOC with disabilities who are most likely to be institutionalized. Our movement needs to be more inclusive and fight for EVERY Disabled person, not just a privileged subset of our community.

MYTH: This bill wasn’t written by professionals so it can’t be good legislation.

FACT: Let’s be honest. You don’t need a title to understand this issue. In fact, those who understand this issue best don’t have titles. The fact that this bill was crafted by Disabled activists means it was written by people directly impacted by the issue. That’s a strength, not a weakness. Those that think otherwise need to check their bias.

MYTH: A programmatic solution is better.

FACT: Frankly, we tried that already and it didn’t work. States that implemented the Community First Choice Option are supposed to have a mandate that levels the playing field between institutional placement and community based services. Although this has offered enhancements and additional funding to states, it hasn’t changed much else. In fact, some states that were given enhanced funds for community based services during the pandemic, used those funds to support their institutions or bolster the bottom line for insurance companies and didn’t do much at all for Disabled people.

Additionally, ADAPT worked for decades and wasn’t able to significantly move a program bill, despite a lot of hard work. The highest number of cosponsors on any of these bills was 131 in the House for the Community Choice Act of 2009. During the last two Congresses, we have had significantly more House cosponsors: 238 in the 116th Congress and 202 in the 117th Congress - even though the the bill was introduced late in the session and the Capitol was "closed".

That doesn’t mean a programmatic solution is bad. In fact, establishing an enforceable right to community integration for ALL Disabled people will broaden support for programmatic solutions.

MYTH: The Latonya Reeves Freedom Act doesn’t address attendant wages.

FACT: Anyone who says this has not read Section 4(b)(6) of the bill. That section of the bill defines discrimination as “a failure to establish an adequate rate or other payment structure that is necessary to ensure the availability of a workforce sufficient to support an individual with an LTSS disability in living in the community and leading an independent life.” It’s wordy, but says that money need to ensure an adequate workforce. If the rates are too low and attendants are unavailable, Disabled people impacted by the issue can sue.

MYTH: The Latonya Reeves Freedom Act doesn’t address housing.

FACT: In addition to ensuring the availability of services and supports, the Latonya Reeves Freedom Act addresses the need for housing. Too often Disabled people are told they have no other choice but to go into an institutional setting because they do not have and cannot get the housing they need to be independent. Under LRFA, the failure of a public entity to ensure that there is sufficient availability of affordable, accessible, and integrated housing to allow an individual with an LTSS disability to choose to live in the community and lead an independent life is considered discrimination.

LRFA also recognizes that even if housing is affordable, accessible and integrated in the community, when the services an individual with an LTSS disability needs are tied to their housing, that individual’s ability control their services or lead an independent life may be limited. Consequently, the bill requires that individuals with LTSS disabilities be given the option to live in housing where the receipt of LTSS is not tied to tenancy. LRFA does not prevent an individual from choosing to live in assisted living facilities or groups homes – where services and housing are tied together – but it does require that they have the option to live someplace else where they can change service providers without losing their housing.

MYTH: The Latonya Reeves Freedom Act doesn’t address emergencies.

FACT: Section 4(b)(7) requires that services be available on an intermittent, short-term, or emergent basis. This covers a lot of ground. Situations this would address include: an attendant not showing up for work, an exacerbation of someone’s disability, a wheelchair or other equipment breaking down, a storm or other emergency that displaces people with LTSS disabilities, and more. It will be important for advocates to ensure that this provision of the bill is thoroughly addressed in the self-evaluations and transition plans.

What does the bill intend when it says that individuals with LTSS disabilities should be able to lead an independent life? People with disabilities want to live the same kind of lives most other Americans take for granted. We want to get an education, work, find someone to share our lives with and have a family. For individuals with LTSS disabilities who are locked away in institutions, this really isn’t possible.

Even individuals receiving LTSS in the community can find their lives limited by the services they receive because those services are provided under a medical model that treats them as if they were sick, rather than needing support with their everyday living. Common problems include:

• Requirements that the individual with an LTSS disability be in the home to get the assistance they need – or start and end shifts in the home – so they are effectively unable to do things outside the home like go to school or work;

• Service providers refusing to assist disabled individuals with specific tasks that restrict their independence including travel, shopping, or intimacy;

• Policies that prevent the child of someone with a significant disability from benefiting from assistance so that an attendant may cook for the individual with an LTSS disability but not their dependent child. This results in providers pressuring the disabled individual into aborting a pregnancy or giving up their child; and

• Policies that prevent an attendant from helping a Disabled individual care for a pet, denying Disabled individuals the joy associated with that.

It is also a common practice – as a cost containment measure – to require individuals with LTSS disabilities to go to a day program where they can receive assistance with a mid-day meal and toileting. In some cases, the individual may enjoy the opportunity to socialize with other people and participate in various activities, but when the individual cannot get assistance outside the group setting their opportunities for an independent and integrated life are severely constrained. They cannot go to school, work, worship or volunteer outside of the group setting, effectively imprisoning them. LRFA is intended to ensure that individuals with LTSS disabilities are able to choose where they live, what they do and receive services and supports to help that person achieve their self-determined goals through their self-determined plan.