An Explainer for People Who Need and Use AAC
Last week, the Trump administration announced in a Department of Justice (DOJ) memo its new position that people with disabilities do not have the right to live in the community. This memo says that our states can send us to live in nursing facilities, state developmental centers, and other institutions, rather than supporting us to live at home and in our communities, as we want to.
This memo does not change the law. But it does mean that the US government has made a major policy decision to not enforce our right to live where we want. This decision means that states will be more free to deny our requests to live at home and could tell us we can only receive disability-related services and benefits if we live in institutions.
This policy change is especially important for our community of people who rely on augmentative and alternative communication (AAC) tools and supports to be heard and understood. Why? We are the first to be sent away and the last to be freed from institutions. This is because the vast majority of people in our community continue to be denied access to language-based AAC that works for us. (This is particularly true if we live in institutions.) Most of us have no way to express our preferences about where we want to live and with whom we live. By being denied access to effective AAC, we aren’t even given the opportunity to say we would rather be supported to live at home than in a facility. Our community is overwhelmingly misunderstood; often labeled as “difficult” and “hard to serve,” giving the government even more reason to try to institutionalize us.
Why the Olmstead Case Is Important for People Who Need AAC
One of the most important court decisions in United States disability history, Olmstead v. L.C, upheld our right to live in our communities. The Supreme Court confirmed that isolating people with disabilities from our communities is a form of discrimination under the 1990 Americans with Disabilities Act (ADA). It said that a disabled person has the right to receive government-funded supports and services to live in an integrated community-based setting instead of in an institution if that is what they want.
The Supreme Court’s decision built on decades of efforts by Congress to help people with disabilities stay at home. Until the early 1980s, in most states, sending family members to institutions was the only option to receive publicly-funded care for those who needed disability-related support. After it became clear that institutions are more expensive and worse for our physical and mental health, society demanded the right for disabled people to receive supports and services in the community.
In 1982, President Ronald Reagan took the first step to integrate people with significant disability-related support needs by creating what was called a “Katie Beckett Waiver.” This allowed families to choose to use government resources like Medicaid to support their loved ones at home instead of in institutions if they wished. Since then, Medicaid home and community based services (HCBS) waivers have not only saved the government a lot of money but have made life better, safer, and more humane for millions.
In passing the ADA a few years later, Congress noted that society has “tended to isolate and segregate individuals with disabilities” and that this isolation—in the form of institutionalization, exclusion from programs, and segregation—was a form of discrimination against people with disabilities. It said that our country’s goal should be to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency” for all people with disabilities.
When he signed the ADA in 1990, President George H. W. Bush emphasized that the law “signals the end to the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life.” Nine years later, the Supreme Court confirmed that right in the Olmstead case.
What the Trump Administration’s Attack on Olmstead Means
Instead of celebrating the anniversary of Olmstead earlier this week, the Trump administration released a memo that reverses the way the US government has understood and enforced disability civil rights for decades. This memo argues that, despite what the ADA and Olmstead actually state, the ADA doesn’t actually give us the right to be supported in the community. It also argues that Congress isn’t even allowed to protect our right to live in the community.
Again, this memo doesn’t change the law. And the legal arguments it makes are questionable. Many courts have confirmed that we have a right to live in the community since the Olmstead decision. But the memo does signal that the Trump administration won’t help enforce our rights, and might even go to court to oppose our rights.
We Won’t Go Back
When CommunicationFIRST co-founder Bob Williams was born with cerebral palsy in the late 1950s, his parents were told to put him in an institution and to never look back. His parents ignored that advice, and in the late 1990s, Bob was a senior official in the US government when the Olmstead case was making its way to the Supreme Court. He became a key part of the team that developed the government’s position in the case.
Reacting to the recent Trump administration memo, Bob commented, “As deplorable as this attempt to afford states license to forcibly and needlessly institutionalize people with disabilities is, it is certainly not surprising. This is just the latest in a continuing series of assaults designed to caricature disabled people as uneducable, vilified, and institutionalized. I was fortunate to escape the fate of hundreds of thousands of baby boomers with significant disabilities who were institutionalized not by willing parents, but by the state. Much later, when I helped several people with significant disabilities to leave their cage-like cribs, gain the strength to sit up and move about in wheelchairs, and leave Forest Haven to homes in DC, I saw myself through their eyes. It is because of the heinous sacrifices they and others have made that all the disability rights gains during my nearly 70 years have become morally imperative. We must not turn back time, nor enable the lives and sacrifices of our ancestors to be forgotten or discarded as having been in vain.”
CommunicationFIRST joins with the rest of the national Consortium for Constituents with Disabilities and dozens of other disability and civil rights organizations in expressing both outrage and deep concern regarding the memo and what it signals for the federal government’s position on how people who need AAC receive supports.
What We Can Do
We must stay involved and express our concerns about this attempt to roll back our rights on deciding where we want to live.
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- Learn about the history of institutions in the United States. A great place to start is this website by the Minnesota Developmental Disabilities Council.
- Raise awareness among your friends, neighbors, communities, the media, and your local and state representatives and officials about this policy change and how important living in the community is to you.
- Pay attention to how the current administration and officials in your state talk about the Olmstead case, Medicaid waivers, and changes to how people with disabilities receive support and care. Let CommunicationFIRST know about any efforts in your state to roll back community supports by emailing info@communicationfirst.org.
- Share about your rights under the ADA to choose where you want to live and be supported.
- Show up to campaign events and public meetings, and talk about how important living in the community is to you.
- Take photos and make statements on social media about this issue.
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Image Description:
[Image: “We must not turn back time,” attributed to Bob Williams, is written in bold white letters against a black background. The CommunicationFIRST logo is centered below Bob’s name.]