Henry and Elizabeth Lahrmann were born with severe neurological damage. As infants, they were diagnosed with profound intellectual disabilities and suffered from West Syndrome, a seizure disorder. Today, both are tube-fed and quadriplegic, and their infantile spasms developed into an intractable condition characterized by periodic, life-threatening seizures. Despite these challenges, their mother, Caroline, says that Henry and Elizabeth are happy, largely because of where and with whom they live.
As children, Henry and Elizabeth lived at the Heinzerling Memorial Foundation, a 100-bed intermediate care facility (ICF) in Ohio founded in 1959 by a couple who mortgaged their family home to build and staff an institution offering around-the-clock care to severely disabled kids. Henry and Elizabeth thrived on Heinzerling’s campus, Caroline said, where they developed lifelong friends and grew increasingly independent with the aid of the facility’s protective environment and wraparound medical services.
“It’s the institution that gives them greater independence,” Caroline said in 2019. “Henry can wheel himself independently. He is safe everywhere he goes, and that gives him more independence. Elizabeth is getting so much more socialization at an ICF than she would get at home,” where, Caroline said, Henry and Elizabeth would be comparatively isolated. Today, Henry and Elizabeth continue to live happily at an Heinzerling-operated ICF.
Caroline is thrilled with her now-adult children’s care. Members of the Biden administration, however, are not.
Prominent disability advocates, who have found sympathetic ears in Biden’s cabinet, have long argued that “congregate settings,” like Heinzerling, are “segregated”—meaning, in this context, that they are predominantly inhabited by disabled people—and that government agencies should use their rulemaking and enforcement powers to disfavor and eventually close all such facilities, relocating residents to smaller, “community-based” settings. Such advocates—often higher-functioning disabled people who consider themselves spokesmen for the more severely disabled people living in institutional environments—argue that congregate settings unnecessarily limit residents’ freedom and are inherently prone to the kinds of abuse and neglect seen at some nineteenth- and twentieth-century asylums, care homes, and orphanages. The Department of Health and Human Services’ Office for Civil Rights (OCR), which interprets and enforces federal civil rights law relevant to health- and social-services providers and recipients, apparently agrees with the advocates’ position, and proposed a rule late last year that could upend the lives of millions of Americans like Henry and Elizabeth.
The proposed rule would amend OCR’s interpretation of Section 504 of the 1973 Rehabilitation Act, which bans disability-based discrimination in federally funded programs, in two major ways. First, it would bar state child-welfare agencies from considering congregate institutions, such as Heinzerling, “the most appropriate long-term placement for children, regardless of their level of disability.” Second, it would redefine “integrated settings” as those that give disabled people the “opportunity to interact with non-disabled persons to the fullest extent possible” and “are located in mainstream society.” Both changes were drafted with lawyerly precision and, if published as drafted, will eventually be leveraged by activist nonprofits and disability-rights ideologues in the Justice Department to shutter nursing homes, psychiatric hospitals, and more.
OCR’s first change applies specifically to disabled foster children. The agency asserts that it is “never”—under any circumstances, and “regardless of” a child’s “level of disability”—appropriate to consider a congregate setting the “most appropriate long-term placement” for children. While the agency does not and could not know this to be true in every case, it justifies this claim by appealing to the Department of Justice’s assertion in a 2021 lawsuit against Alaska, and to “research in the field.” The “research” that both Justice and OCR cite—the latter in favor of the broad proposition that institutions are “never” appropriate long-term placements for disabled children—is a single 2014 literature review, which even concedes previous studies’ finding that disabled children in congregate institutions have seen “improvements in clinical symptoms.”
While OCR insists that its guidance reflects the scholarly consensus, the agency is reasoning backward from an ideological premise: that no one, no matter how severely disabled, wants or needs institutional care, and that, consequently, every congregate institution for people with disabilities should be closed. This has been the organizing principle of disability-rights advocacy in the United States since the Kennedy administration and is the stated position of many disability-rights groups. ADAPT, for example, a leading disability-rights nonprofit with which the Biden administration’s head of the Administration for Community Living once joined in protest, believes that “no one,” no matter their age or level of functioning, “needs to live in a nursing home.” ADAPT thus supports the “demise of the nursing home industry,” and advocates for serving all people, regardless of age or disability, in “community-based” settings.
While OCR’s guidance on Section 504 supposedly applies only to disabled foster children, its argument that a congregate setting is “never” an appropriate long-term placement for “children” does not distinguish between foster and non-foster children. Like the agency’s citation of the Department of Justice’s 2021 finding in Alaska, this sentence—“Congregate care should never be considered the most appropriate long-term placement for children, regardless of their level of disability”—likely will be cited out of context in future guidance to substantiate the federal government’s claim that no disabled child, foster or otherwise, should be sustained in a federally funded institutional setting. (While Henry and Elizabeth are not foster children, their cases show that some disabled children can be appropriately served in institutional environments, undermining OCR’s claim to the contrary.)
The rule, if published as proposed, will enable a massive lawfare campaign against state foster-care and disability systems. States that continue to use Medicaid funds to sustain severely disabled children like Henry and Elizabeth in congregate settings, even when such placements are voluntary, will face expensive lawsuits. The cost of those suits will give states an irresistible incentive to move kids like Henry and Elizabeth out of institutional settings without the children’s, their parents’, or their treatment professional’s consent. In the past, such transfers have sometimes been conducted by force and have resulted in higher than expected mortality rates for transferred residents.
While this portion of the proposed rule applies only to children, OCR and related agencies will likely apply its logic to adults in the future. Consider the arbitrariness of the agency’s position. Is there a meaningful clinical difference between a 17-year-old with severe mental disabilities and an 18-year-old with the same disabilities? If it is categorically inappropriate (“never appropriate . . . regardless of level of disability”) to place the 17-year-old in a long-term institutional setting, why would it ever be proper to place the 18-year-old in such an environment?
This, to disability-rights advocates, is a feature of the agency’s guidance: it would enable eventually declaring institutions of all kinds—nursing homes, psychiatric hospitals, addiction-recovery centers, disability-specific campuses—categorically unsuitable and ineligible for federal funds. Joe Biden staffed OCR and related disability agencies, such as the Administration for Community Living, with lifelong disability-rights advocates, who almost certainly intend this ban on long-term childhood institutional placements to enable their longer-range goal: banning institutional placements for people of all ages, and closing all “institutions,” according to activists’ belief that no disabled person, no matter their age and “regardless of level of disability,” is better served in an institution than in a “community-based setting.”
That this is the agency’s intention is made clear by its second proposed change to the Section 504 guidance. OCR proposes to redefine “integrated settings”—a term of art describing settings eligible for federal Medicaid reimbursement under the home- and community-based-settings (HCBS) program—as those that allow “individuals with disabilities the opportunity to interact with non-disabled persons to the fullest extent possible; are located in mainstream society; offer access to community activities and opportunities at times, frequencies and with persons of an individual’s choosing; and afford individuals choice in their daily life activities.”
This change contains an implicit tension—it says, on the one hand, that an integrated setting is one where disabled people have “the opportunity to interact with non-disabled persons to the fullest extent possible”; on the other, it says that service recipients should be able to access “community activities and opportunities” with persons of their “choosing.” Can people with disabilities choose to receive services in a setting—a hospital, a campus, or some specialized facility—where people with similar disabilities congregate, and receive community-designated federal reimbursement for the costs associated with receiving those services? Given that another constitutive element of the agency’s integrated-settings definition is that the settings be located “in mainstream society,” the answer would seem to be “no.”
The agency is drawing a stark line between “integrated” and “segregated” settings to potentially lay the foundation for using Medicaid reimbursement rates to disfavor, and eventually close, “segregated” settings. Today, federal regulators allow certain congregate settings—such as farmsteads and other campus-based environments—to be deemed “integrated,” and thus eligible for HCBS reimbursement, if they allow residents adequate access to the broader community. Thus, a campus-based setting, while not located in “mainstream society,” could still get HCBS funds. The proposed guidance seemingly renders such settings ineligible for this funding. That’s significant, because disability-rights activists in the federal bureaucracy have incrementally pursued the goal of restricting what qualifies as “integrated settings” to those with the fewest disabled people living together. Pennsylvania, for example, has interpreted the federal guidance such that it restricts the size of Medicaid-eligible group homes to those with four or fewer residents. At the same time, these agencies have sought to expand the definition of “segregated settings” to include most campus-based and congregate facilities. If disability-rights groups’ statements are to be believed, the agency’s reason for etching a sharp distinction between “integrated” and “segregated” settings into HHS’s binding interpretation of federal law is to lay the foundation for eventually changing federal reimbursement rates for the two forms of service—with the eventual goal of giving states an irresistible incentive to move all patients in “segregated” (that is, congregated) settings into “integrated” settings, and eventually ceasing all federal payments to so-called segregated settings.
This has been activists’ long-standing plan: to dismantle institutional care in the United States. The University of Minnesota’s Institute on Community Integration, for example, encouraged states to “use Medicaid rebalancing and other incentives to downsize and close all [intellectual and developmental disabilities] facilities serving 16 or more people.” Similar logic would be used to shut down most nursing homes, psychiatric hospitals, addiction-treatment centers, and other forms of congregated social services, with the vanguard of the disability-rights movement calling for the abolition of long-term care.
OCR’s guidance is morally and practically indefensible. It could set the stage for the end of institutional care in America and disrupt the services received by thousands of disabled children across the country. Congress should use its review powers to prevent the proposed rule change from being published as final in the Federal Register. Barring that, a future administration should repeal the ban on federally funded long-term institutional placements for foster children and draft a new interpretation of Section 504 that asserts that “integration” does not always mean living in a setting with as few disabled people as possible.
Similarly, regulators should acknowledge that the friendships that people with disabilities forge in disability-specific (“segregated”) settings are just as valuable as the friendships they make in supposedly “integrated settings.” When Joey Jennings, a Pennsylvania man with severe autism whom I profiled two years ago for City Journal, was living in “the community,” he was evicted from several group homes, sent to six psychiatric wards, and regularly had the police called on him when he went to the local swimming pool, where his outbursts endangered the children swimming with him. When he was admitted to an “institution,” he was able regularly to use the on-campus pool and made friends with similar challenges. Countless children and adults with disabilities have had similar experiences.
“Community integration,” Caroline Lahrmann told me, “to these advocates, is defined as the most access to non-disabled people.” She said that the attitude was “discriminatory . . . toward people with intellectual and developmental disabilities,” since it “implies that it is less valuable to form relationships with them, that they are not as valuable to be living with. My children don’t care whether someone is disabled or not—they just see people.”
Photo by Mark Boster/Los Angeles Times via Getty Images