Morally and Practically Indefensible (new Biden rule on care for the disabled)

[mountaineer]

John Hirschauer
Morally and Practically Indefensible
A new Biden administration rule could lay the groundwork for the final dismantling of institutional care in America—and disrupt the services received by thousands of disabled kids across the country.
Mar 06 2024

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.  ...

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