The Olmstead Decision | The importance of living in Community |

Friends,

I walked 1.25 miles on my new ankle! It's a pretty exciting time for ankle life. I've done enough exercise to make it clear that the repaired ankle (left) is in much better condition than the other (right). I'll have that surgery in September. Of course right ankles affect driving.

Still I'm hoping to be one soon enough to be able to ski in January, maybe even in December.

Liz

Keeping people in Community

I'm often tangentially connected to issues affecting people with disabilities. A friend mentions their child, or their cousin's child. A neighbor mentions a struggle. A pastor, not at my church, but at another church, describes a situation.

When I was pastor of a street church, I often was surprised at how often disabilities were what precipitated a person's homelessness--it seemed a more consistent underlying cause than addiction.

What I can see clearly is that the [massive] improvements brought about by the Americans with Disability Act (ADA) leave us still with a system that doesn't care very much about people with disabilities. There is a safety net; it is small, fragile, and hard to access.

In 1999 Olmstead vs. L.C. determined that people with disabilities have a civil right to live within their home community. The explicit point of the decision was that there are very limited reasons for institutionalizing people. Individuals should have choices. To deny people the ability to live at home, in their community, with their family and friends, is to deny personal liberties the constitution protects.

Practically this requires states, often through medicaid, to provide support services to individuals in the form of personal aids, accessible transportation, care coordination, mobile crisis teams, scatter site housing, and more. Note that despite the long list of services provided, there is good evidence that all of this is much cheaper than institutionalization.

Notably, every federal administration since 1999 has actively enforced the Olmstead decision, protecting people's rights to housing in their communities.

Until June 2026.

Our present administration has quietly begun a major attack on disability services. The Office of Legal Counsel gave a memo saying that Olmstead only prohibits institutionalization "without cause". It explicitly back pedals on keeping people with disabilities in the local community, and acknowledges that this is a different interpretation of this case than what we have heard since 1999.

Some believe the point of this memo is in preparation for cases from Texas and elsewhere attacking Olmstead and moving through our court system. Those suing want to be able to stop spending funds on the diverse programming that Olmstead ensures. Along with cuts to medicaid, this administration is aiming to involuntarily institutionalize adults who are homeless. Perhaps as a side affect, perhaps on purpose, this is already threatening to remove people with disabilities from their homes and into institutions.

Right now, in their yearly review of state provided services, people are already hearing that they are "too disabled" to live at home. My friend Jeneva Burroughs Stone pleas with us to not look away. We must see what is being hidden from us, we must see what is happening to our neighbors, friends, and family with disabilities.

"Do not engage in magical thinking about the fate of disabled people. Do not assuage your conscience by imagining that families can simply absorb all the gratuitous care, additional costs and loss of income that come when federal and state systems fail or are indifferent.

[My son's] life depends on your wrestling and reckoning with the truth: that there is no nice farm upstate where disabled people can go and nice strangers care for them. That’s the same lie we tell little children about dead pets. Think about that. "

What are we to do?

Of course as churches we should be welcoming, and supportive of families that include people with disabilities. But this time in history calls for more than being nice.

The first people who disappeared under Nazism were people with disabilities and people who were trans. I don't know if people didn't care, but we do know that, for the most part, people didn't notice. We as church have an obligation to not let that happen again.

We must talk to state officials and demand that all people who need care are provided that care in the least restrictive environment. It is reasonable, and practical, for people to have aids, nursing care, and support services available in their homes. We must ask our local communities to provide those services.

We must write letters, make phone calls, ask questions; we can stand up for our neighbors. We can play a role in educating our community, we can remind each other of the value of every child of God, whatever their age, their stage, their struggles.

This was a one day news item in the chaos of all the changes happening around us, hurting people around us. Yet it will affect people well into their future if they lose their right to community based housing today. We must see what is happening.

What is your church doing around disability civil rights? Reply to this email to let me know what's happening. ​
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Here is the study on the costs and benefits of making accomodations so people with disabilities can live at home.

More information on the importance of the Olmstead decision and how reinterpreting it will hurt people from the National Down Syndrome Society.

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