Address Abuse in 'Community-Based' Settings, Too
More than 90 percent of people with intellectual disabilities receiving Medicaid services do so in “the community,” raising questions about a new institution-focused Senate bill.
The Preventing Abuse and Neglect of Vulnerable Americans Act, a new bill co-sponsored by Senators Kyrsten Sinema (D-Ariz.) and Mark Kelly (R-Ariz.), would require the Secretary of Health and Human Services to "make certain information" about intermediate care facilities for individuals with intellectual disabilities (ICF-IIDs) "available on a public website," including substantiated reports of abuse and neglect. It also calls for the creation of an "Advisory Council," composed of people with I/DD, guardians of ICF-IID residents, "[a]dvocates for individuals with intellectual and developmental disabilities," and other parties. The council would make recommendations to Congress on how to reduce incidents of abuse, neglect, and exploitation in institutional settings for people with I/DD. The bill was prompted by several incidents of abuse at Hacienda, a private ICF-IID in Arizona.
The intermediate care facility model was created in 1971 as a Medicaid-funded program to replace the "snake pit" institutions erected to care for people with intellectual and developmental disabilities in the late 19th and early 20th centuries. The program achieved that goal not by replacing the old institutions but by subjecting them to intense federal oversight; over time, every state-run institution that survived the initial push to close disability-specific facilities in the middle of the 20th century gained an ICF-IID license.
Today, most ICF-IIDs have 16 or more beds. Some have upwards of 500 residents. Many have on-site nursing, dental, psychiatric, and administrative staff, and are often located in rural areas or set on large physical plants.
The ICF-IID is an entitlement under Medicaid; states that include ICF-IIDs on their state Medicaid plans are required to offer it to qualifying disabled individuals. However, many parents in the years after the ICF program's creation found that their disabled adult children didn't need the intensive services offered at a campus-based ICF, and pushed for the creation of less-structured services that could keep their adult children in something closer to a "normal" home. In 1981, Medicaid began offering the home- and community-based services (HCBS) waiver as an alternative to the ICF model; qualifying individuals with disabilities could "waive" their ICF-IID entitlement and enter a "community-based" setting, such as a group home, instead.
Today, the overwhelming majority of people with I/DD receiving Medicaid services are doing so in "the community." As of 2016, 92 percent of Medicaid service recipients with I/DD receiving residential services did so in "the community," and 8 percent did so in an ICF-IID (an "institution"). This is the result of a decades-long effort by disability-rights groups to block access to institutional care by "closing the front door"—that is, closing admissions to institutions by law.
The average ICF-IID client today has more intense service needs than the average client served in a home- and community-based setting. Many residents have co-occurring mental illnesses like schizophrenia, severe behavioral challenges related to autism, or medical conditions that require intensive, 24/7 support. Given their size, ICF-IIDs are able to economize in ways that smaller facilities cannot, and can serve patients who may otherwise have required inpatient psychiatric care or placement at a nursing home.
Like every state, Arizona's disability-services system is overwhelmingly focused on delivering "community-based," rather than "institutional" supports. At one time, Arizona's largest institution, the state-operated Arizona Training Program at Coolidge, housed nearly 3,000 patients. Admissions to the institution were closed by the state legislature in 1979, and as of 2017, only 63 patients remained. As of 2018, only 127 people with I/DD in Arizona lived in ICF-IIDs. By comparison, over 33,000 individuals with I/DD in Arizona receive services in "home- and community-based settings."
It is curious that the Preventing Abuse and Neglect of Vulnerable Americans Act, introduced by two Arizona senators, does not apply to "community-based" settings. After all, between 2019 and 2020, there were over 10,000 reported incidents of abuse and neglect in the state's HCBS system. Why don't they subject "community-based" settings to the same heightened scrutiny as ICF-IIDs? Why not require "community-based" settings to post substantiated incidents of abuse on the internet, or have outside "advocates" determine their fate in Congress?
Proponents of deinstitutionalization would argue in response that institutional settings are inherently prone to abuse and neglect. But "community-based" settings are rife with unreported abuse. A 2018 joint report by the Office of the Inspector General, the Department of Health and Human Services, the Office for Civil Rights, and the Administration for Community Living found that up to 99 percent of critical incidents of abuse and neglect in group homes go unreported. The report found that
Group Home beneficiaries are at risk of serious harm. OIG found that health and safety policies and procedures were not being followed. Failure to comply with these policies and procedures left group home beneficiaries at risk of serious harm. These are not isolated incidents but a systemic problem – 49 States had media reports of health and safety problems in group homes.
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If abuse is a problem across the disability-services industry—from state schools to independent-living arrangements—why are disability-rights groups endorsing a bill that only targets abuse in "institutions" and not in "community-based" settings?
It is because they want to close ICF-IIDs. Several of the nonprofit groups endorsing the PANVAA bill are opposed to "institutionalization." Their organizations have been the leading forces in the movement to close ICF-IIDs, and have spearheaded a decades-long effort to close all "institutions" and move people with disabilities "into the community," with or without the consent of ICF-IID residents or their families. The bill, if enacted, would provide these groups the opportunity to paint "institutional" settings as being uniquely plagued by abuse and neglect, since there is no companion legislation that would impose the same public-reporting standards on "community-based" settings.
Abuse is terrible, and is particularly so in the case of people with I/DD, who are uniquely vulnerable to the predations of abusers. Any effort that meaningfully reduces incidents of abuse and neglect is to be celebrated. But by focusing on ICF-IIDs to the exclusion of "community-based settings," the nonprofit groups that spend their days trying to force the remaining 8 percent of people with I/DD who live in "institutions" to enter "the community" get yet another weapon in their arsenal.