Why is this legislation called the Disability Integration Act (DIA)?
The name highlights the fact that this bill supports the Disability Community and the integration of people with disabilities in society. When ADAPT and NCIL were discussing options for the this name, we liked that the acronym “DIA” pays homage to Disabled In Action, an activist disability rights organization founded in 1970. In fact, some ADAPT chapters have grown out of that group and similar activist groups.
Does the Disability Integration Act amend the ADA?
No! The proposed language is structured like the ADA and uses mechanisms comparable to those in the ADA to ensure that all individuals with disabilities have the right to live in the community and lead an independent life, but it does NOT change the ADA.
Does the Disability Integration Act only apply to people with certain kinds of disabilities?
No. The bill was crafted by experts on the Long Term Services and Support (LTSS) needs of people with a wide range of disabilities including the Autistic Self Advocacy Network (ASAN), the Bazelon Center for Mental Health Law, the National Council on Independent Living, and ADAPT. It requires states to ensure that people with all types of disabilities have a choice to live in the community and lead independent lives.
In fact, the bill specifically helps people whose disability or diagnosis affects their eligibility for community-based services and are having trouble getting those services. Currently, states may limit eligibility to community-based services provided under a waiver to people with specific diagnoses, leaving others with only access to institutional placement. DIA makes that discriminatory practice illegal.
What do we mean when we use the phrase “LTSS disabilities?”
This refers to people whose disabilities require long-term services and supports, whether those services and supports are provided in the community or in an institution. When people with LTSS disabilities are declined an option to receive those services and supports in the community, the DIA would consider that to be discrimination.
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; and
- 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.
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 their mid-day meal and daily 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 to lead 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. DIA 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.
I understand that people need services and supports to lead an independent life, but the lack of affordable, accessible and integrated housing has been repeatedly identified as one of the biggest barriers to community reintegration of people with disabilities. Does DIA address that?
Yes! In addition to the changes surrounding the availability of services and supports, the Disability Integration 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 DIA, 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.
DIA 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, DIA requires that individuals with LTSS disabilities be given the option to live in housing where the receipt of LTSS is not tied to tenancy. DIA 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.
Housing is a critical need, but the lack of accessible transportation also impacts the ability of people with LTSS disabilities to live in the community. What does the bill do to address transportation?
We recognize that transportation barriers may prevent people with LTSS disabilities from living in the community and being integrated into society. DIA requires public entities to assess the availability of accessible, affordable transportation as part of their self-evaluation. Entities must assess whether transportation barriers prevent individuals with LTSS disabilities from being integrated into the community.
Does the Disability Integration Act address the needs of people with mental health disabilities?
Yes. In fact, because this legislation does not amend Medicaid law, it can 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.
Does the Disability Integration Act address the needs of people with mental health disabilities who cycle through “the system” because they do not get the support they need to remain independent?
First, the federal government (the Centers for Medicaid and Medicare, and the Department of Health and Human Services) has already identified and defined “institutions” in their rules to include “hospitals.” DIA also requires that people with LTSS disabilities be provided assistance in addressing their “short-term, intermittent or emergent” LTSS needs. Therefore, people with mental health disabilities at risk of institutionalization, including in a hospital, because intermittent assistance in responding to emergent situations or crises are not provided would be considered discriminated against and would be protected under the DIA.
Does the Disability Integration Act address the needs of informal caregivers?
Yes! Although the focus of this bill is the rights of people with LTSS disabilities, we know that informal caregivers are often critically important for supporting people with LTSS disabilities. The issue of informal caregivers is addressed in a couple different sections of the bill.
First, the legislation requires that each public entity and LTSS insurance provider, provides the Attorney General and the Administrator with an assurance that the public entity or LTSS insurance provider give support to informal caregivers who provide services for individuals with LTSS disabilities.
The legislation also makes it illegal to impose or apply policies that restrict access to LTSS needed to live in the community and lead an independent life, such as requiring people with LTSS disabilities to utilize informal supports. This means that a person with an LTSS disability cannot be required to rely on informal caregivers. This specific prohibition was written because such policies restrict the ability of people with LTSS disabilities to participate fully and independently in society. We also recognized that family members have been pressured into accepting responsibility for providing assistance, and at times, putting their own health at risk to preserve the independence of a family member. This provision in DIA would address that as well.
Does the Disability Integration Act undercut the ability of seniors and people with disabilities to choose institutional placement?
No. 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 Disability Integration 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.”
Does the Disability Integration Act undercut the ability of states to design their own Medicaid programs?
No. States can design their programs however they want. The legislation does not undercut the flexibility that states have and they can maintain the options that would not be considered “community” under this legislation. They simply need to ensure that individuals with LTSS disabilities have the choice and opportunity to be integrated in the community.
By eliminating the state’s ability to cap the amount of services it will pay for, aren’t you going to drive their Medicaid costs through the roof?
No. It is commonly understood that community-based services are generally more cost-effective that institutional placement, and transitioning to home and community-based services saves money. This is supported by academic research. A published academic analysis of state spending data from 1995 to 2005 demonstrated that for two distinct population groups receiving long-term care services, spending growth was greater for states offering limited non-institutional services than for states with large, well-established non-institutional alternatives. That report said that the expansion of home and community-based services appeared to entail a short-term increase in spending, followed by a reduction in institutional spending and long-term cost savings.
Although there are people for whom the cost of community-based services and supports is higher in the community on an individual basis, this is a very small number of people. Overall, the savings associated with providing services and supports in the community balances out the additional cost associated with this small number of higher-cost individuals.
Other approaches of cost-control are also still available. States and managed care companies simply would not be allowed to limit funding for services in such a way that an individual with an LTSS disability is forced into unwanted institutionalization.
Finally, people with LTSS disabilities can be served effectively in the community when the services and supports they need are provided. The U.S. Constitution guarantees that all Americans have the rights to Life and Liberty, and there is no provision that excludes individuals with significant disabilities. So, even if it does cost more to allow people with significant disabilities to live in freedom, there should be no financial constraint imposed on our Constitutional rights.
Has the Congressional Budget Office (CBO) done a financial score of the bill?
There is no CBO score, but people who have been in Congress for a long time may remember a score given to previous legislation addressing this issue – the Medicaid Community Attendant Services and Supports Act. That legislation was given a score of $10-$20 billion for new federal expenditures annually. Research done in 2007, however, demonstrated that the Congressional Budget Office significantly overestimated the number of people who would be at the institutional level of care and grossly overestimated the cost of providing a mandatory benefit under that bill. This research indicated that the actual cost would be one-tenth the CBO projection.
Here is a link to the research: Estimating the Expense of a Mandatory Home and Community Based Personal Assistance Services Benefit Under Medicaid
Additionally, over the last decade (since the 2007 study was done) states have continued the shift to providing home and community based services as opposed to institutionalization. In fact, since 2013, the majority of Medicaid spending for Long Term Services and Supports has been for community-based services, so the cost of ramping up of community-based services and the potential for a “woodwork effect” has been lessened.
Finally, previous legislation required states to implement a specific Medicaid benefit, and nothing in the Disability Integration Act requires that use – or precludes states from using – cost containment approaches or managing their own Medicaid programs as long as the outcome isn’t discriminatory against individuals with LTSS disabilities. Consequently, there is reason to expect the cost associated with this legislation to be reasonable.
Regardless of cost, Disabled Americans are demanding that states and managed care companies not be allowed to take away their Constitutionally-guaranteed rights to Life and Liberty. If a Member of Congress is unwilling to cosponsor and support this legislation because of potential cost, they should be expected to defend that position based on their understanding of the Constitution.
Will this legislation undercut Olmstead litigation under Title II of the ADA?
No! The concern that the Disability Integration Act could undercut the ADA and Olmstead litigation and advocacy is unfounded. The bill was written to avoid that.
The findings in the bill state that “While Congress expected that the ADA’s integration mandate would be interpreted in a manner that ensures that individuals who are eligible for institutional placement are able to exercise a right to community-based long-term services and supports, that expectation has not been fulfilled.” Additionally, the findings note that “The holdings of the Supreme Court in Olmstead v. L.C., 527 U.S. 581 (1999), and companion cases, have clearly articulated that individuals with disabilities have a civil right under the ADA to participate in society as equal citizens. However, many States still do not provide sufficient community-based long-term services and supports to individuals with disabilities to end segregation in institutions.”
The stated purpose of the bill is “to clarify and strengthen the ADA’s integration mandate in a manner that accelerates State compliance.” The legislation would do that by establishing a clear and enforceable statutory right to freedom. It is not uncommon to pass legislation that strengthens and clarifies existing law. Frankly, protections in Title II of the ADA duplicate provisions in Section 504 of the Rehabilitation Act. The Disability Community still moved forward to strengthen and clarify Section 504 by creating the ADA. Today, litigants use both laws in the same case. Provisions were also added to the version of the bill introduced in the 115th Congress specifically to ensure that the Disability Integration Act would in no way interfere with Olmstead litigation.
Finally, ADA attorney Steve Gold authored a letter (available here) stating that the Disability Integration Act “not only enshrines in Federal statute the right to live in the community which Olmstead recognized, it takes what disability advocates have learned over the past eighteen years and creates another more powerful tool to effect the integration of people with disabilities.” The letter was cosigned by the following distinguished Disability Rights Attorneys:
- Samuel Bagenstos, J.D., Frank G. Millard Professor of Law at the University of Michigan (Previously Principal Deputy Assistant Attorney General for Civil Rights at the U.S. Department of Justice)
- Alison Barkoff, J.D., Director of Advocacy, Center for Public Representation (previously Special Counsel for Olmstead Enforcement at the U.S. Department of Justice’s Civil Rights Division),
- Curtis L. Decker, J.D., Executive Director of the National Disability Rights Network, Vanita Gupta, J.D. – CEO, Leadership Conference on Civil and Human Rights (previously Principal Deputy Assistant Attorney General and head of the U.S. Department of Justice’s Civil Rights Division)
- Jennifer Mathis, J.D., Deputy Legal Director and Director of Policy and Legal Advocacy of the Judge David L. Bazelon Center for Mental Health Law
- Silvia Yee, Esq.,Senior Staff Attorney, Disability Rights Education and Defense Fund
- James Weisman, Esq., President & CEO United Spinal Association.
If the Disability Integration Act is so similar to the Olmstead integration mandate, why do we need it?
The bill will clarify and strengthen the Olmstead integration mandate. The legislation makes some significant changes to accomplish that. These 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;
- Establishing a process to assess compliance with the milestones and reward states that meet their deadlines; and
- Establishing the ability to be awarded punitive damages.
Individuals cannot get damages under any other section of the ADA. Why does the bill include the ability to get them in the Disability Integration Act?
It has been twenty-eight years since the signing of the ADA, and people are still forced into unwanted institutional placement. As noted in the HELP Committee report, there are serious problems of non-compliance with the ADA’s integration mandate. Adding damages is a way to ensure compliance with the law. Additionally, when States or managed care companies strip Americans of their Constitutionally-protected, inalienable rights to Life and Liberty, they should be penalized.
What exactly do you mean by Constitutionally-protected rights?
From the inception of our country, we have held that there are rights that humans inherently possess:
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”
This was established in the 5th Amendment of the Constitution, which states in part that no person shall “…be deprived of life, liberty, or property, without due process of law,” thus cementing the American values of life and liberty. It was also reaffirmed in the 14th amendment which guaranteed equal protection under the law.
Life and Liberty are Constitutional rights for ALL Americans, including Americans with disabilities. The inalienable and Constitutional right to “life” is not simply a right to breathe and have your heart beat. The right to “life” is the right to have ownership of your own life.
The Supreme Court further clarified this. Justice McReynolds, in writing the decision for the Supreme Court in Meyer v. Nebraska, stated that the “liberty” protected by the Due Process clause “[w]ithout doubt…denotes not merely freedom from bodily restraint but also the right of the individual to contract, to engage in any of the common occupations of life, to acquire useful knowledge, to marry, establish a home and bring up children, to worship God according to the dictates of his own conscience, and generally to enjoy those privileges long recognized at common law as essential to the orderly pursuit of happiness by free men.” Disabled Americans – forced into unwanted institutionalization – are denied these most fundamental rights.
The Supreme Court acknowledged the life and liberty rights of people with disabilities in the Olmstead case. The attorney for the State of Georgia agreed with Justice Scalia that the government would be discriminating against disabled people if it confined them to a hospital setting when they did not have to be there. Not only was this discrimination under the ADA, but Scalia pointed out that this was a violation of Constitutional rights as well. As Justice Scalia recognized, it is a violation of the Constitution to force any person into an institution involuntarily where there is no medical reason for the person to be confined to such institution.
To be fair, the founders of our country and the framers of the Constitution probably could never have imagined that there would be Americans who depend on ventilators to breathe, wheelchairs for mobility or attendants to simply get out of bed. There will be those who would argue that they would have preferred such individuals to be locked away and die, but – even if that were the case – our collective vision of equality in American society has evolved, and it is time that we finally end the shameful discrimination that denies Disabled Americans their most fundamental rights.
Could the DIA create an accidental threat to the ADA?
The Disability Integration Act was written as a standalone bill consistent with the ADA, and does not open up or amend existing titles within the ADA. The purpose of the DIA is to build on the existing integration mandate of Title II of the ADA and Olmstead.
As we have seen, nothing prevents lawmakers from introducing other legislation that undercuts the ADA. Legislation to limit the ADA has been regularly introduced into Congress and even passed the House in 2018. Concern about such attacks – and the unfounded belief that not advancing DIA somehow protects the ADA – should not be a reason we allow the injustice of forced institutionalization to continue.
Where is the funding in the bill to provide these services?
First, the Disability Integration Act is civil rights legislation, not a program bill. Just as the ADA did not come with funding, neither does the DIA. However, to assist states in making the necessary changes and to help keep them on track, the bill includes an enhanced Medicaid match for community-based services and supports.
Will the strict definition of “community-based” restrict funding to assisted living and group homes?
No. We are not changing the CMS definitions or federal “setting rules” that allow funding to go to these facilities, so the Disability Integration Act does not impact their funding, however, we do not feel such facilities can fairly be characterized as “integrated.” We would not consider it “integrated” if people of color were required to live in buildings that only allowed people of color to be residents. The same should hold true for people with disabilities.
That said, by establishing new civil rights law, instead of changing the Medicaid rules, we clarify the integration mandate without restricting how Medicaid funds may be used. This approach establishes the expectation that people with disabilities have the right and opportunity to live in freedom but avoids unnecessary conflict with states or provider organizations that operate certain types of facility-based settings.
Can states really make the changes required by this legislation?
Absolutely, yes! We recognized that some states have a long way to go and need to change policies, shift funding toward community-based services, and address the need for accessible, affordable, integrated housing that is independent of service delivery. Instead of imposing a one-size-fits-all standard on states, they each develop their own individual transition plans and have up to a decade after the regulations are written to make the needed changes.
DIA includes a temporary enhanced Federal Medicaid share for home and community based services. This provides states with additional resources to help make the necessary changes and mitigate any short-term increases in spending while incentivizing states to make the changes as quickly as possible.
Third, DIA also establishes a mechanism to monitor and ensure public entities’ implementation of their transition plans. There is good reason for doing that. The Disability Community found that – specifically in the case of Amtrak – where longer term infrastructure changes were needed and an extended deadline was established that compliance was not achieved. Amtrak was given twenty years to make its train stations accessible, but 28 years after enactment of the ADA, there are still massive compliance issues. We included this provision in DIA to ensure that what happened with Amtrak and the ADA does not happen with this legislation.
I have heard people say that the Disability Integration Act undermines guardians by forcing deinstitutionalization while at the same time others say it does not address the issue that people may have guardians who inappropriately place them in facilities. Which is correct?
Neither is correct.
First, the bill does not force anyone out of an institution whether or not they have a guardian. Additionally, even though this federal civil rights legislation establishes an enforceable statutory right to community integration of people with disabilities, because guardianship is controlled at the state level, it does not change state guardianship laws. Some people may have misread the bill language when it talks about an individual’s choice as meaning that the bill would allow the individual to override a guardian. That isn’t true. The guardian is empowered under the law to act on behalf of the individual, therefore when the bill talks about the individual’s choice, if the person has a legally appointed guardian who makes these decisions, the guardian makes the choice on behalf of the individual.
Even so, that doesn’t mean the legislation fails to address this issue or other issues that are governed by state law, such as guardianship. Guardians have a responsibility to make these decisions on behalf of the individual, but they need to consider the individual’s preferences. Where inappropriate institutional placement by guardians is a concern, advocates can identify that issue as part of the state’s self evaluation, and then have the state address that issue in the transition plan as required under the legislation. The transition plan could address this by identifying the reasons guardians feel they need to select institutional placement and addressing those gaps in the system or by providing education to guardians about community-based options that exist if that is the problem. If there are problems in a state’s guardianship laws that promote institutionalization, advocates can use the transition planning process to identify and address those issues which could include supported decision making. DIA includes an extensive timeframe for implementing the transition plan to give states the time they need to make these changes.
Does this impact the ability of organizations to pay less than minimum wage?
The bill does not make paying subminimum wage illegal. There is broad-based support in the Disability Community for eliminating sub-minimum wage, but when it comes to developing the strategies for handling that issue, ADAPT and NCIL are following the lead of other national organizations – like the National Federation of the Blind and the Autistic Self Advocacy Network. The Disability Integration Act does consider it discrimination if people are forced into disability-specific settings like day programs and workshops as a condition of receiving home and community based services. The legislation also requires public entities, as part of their self-evaluation, to assess the availability of integrated employment opportunities, but it does not change the rules around sub-minimum wage.
I don’t have an LTSS Disability, so this bill doesn’t impact me. Why should I care?
This issue may not get as much traction as other issues because we have been taught to accept this as a personal problem when, in fact, it is a societal problem and public policy issue. However, every American who lives long enough will be impacted by this issue. Either you have a family member who needs Long Term Services and Supports and faces unwanted institutionalization or you – yourself – will need them and be in the same situation.
If you are a person with a disability – any disability – you should be particularly concerned about this. Although you may not have an LTSS disability today, as you age, because you have a disability you will be at greater risk of unwanted institutionalization. Additionally, the ableist, status quo assumption which allows individuals with LTSS disabilities to be denied their Constitutional rights could eventually be applied to people with other types of disabilities and impact your ability to secure your own rights as a Disabled American. Finally, as a principle, the Disability Community should be united in the fact that no individual with a disability should be denied their rights based on their disability.
Who introduced the Disability Integration Act (DIA)?
The Senate Minority Leader Senator Charles Schumer (NY-D) has introduced the bill in the Senate. Representative James Sensenbrenner (WI-R) has introduced DIA in the House.
Who has cosponsored DIA?
The Disability Integration Act has broad-based, bipartisan support. Although many people describe DIA as a civil rights bill and assume only Democrats will support it, a significant number of Republicans in the House of Representatives have signed on as DIA cosponsors. Some of these have been long-term supporters of the Disability Community. Others were persuaded by the Disability Community’s argument that unwanted institutionalization is inconsistent with our Constitutionally-guaranteed right to Life and Liberty.
What committees is the bill in?
DIA was referred to the Senate HELP (Health, Education, Labor, and Pensions) Committee. In the House of Representatives, the bill has been referred to the Energy and Commerce Committee (which handles Medicaid) and the Judiciary Committee (which handles civil rights).