Also, address abuse in community-based settings

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. The bill also includes the establishment of an “Advisory Council” made up of individuals with I/DD and guardians for ICF-IID residents. It would allow for “[a]dvocates for individuals who have intellectual and developmental disabilities.” and other parties. This council will make recommendations to Congress about how to decrease abuse, neglect and exploitation of I/DD residents in institutions. This bill was inspired by several abuses at Hacienda in Arizona, which is a private ICF/IID.

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 of these facilities have nursing, dental and administrative personnel on site. They are usually located in remote areas, or on large, physical grounds.

The ICF–IID is an entitlement of Medicaid. States that have ICF–IIDs in their Medicaid plans must offer the ICF-IID to qualified disabled persons. In the years that followed the ICF’s launch, parents found out that their children with disabilities didn’t require the ICF-IID intensive care. They advocated for less structured services to keep them in a home that is more like a normal family. 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’s overwhelming majority of I/DD recipients of Medicaid services, they do 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 has greater service needs today than those served in a community or home-based environment. Many residents have co-occurring mental illnesses like schizophrenia, severe behavioral challenges related to autism, or medical conditions that require intensive, 24/7 support. ICF-IIDs can save money because they are larger and can provide care for patients that would otherwise be required at an inpatient psychiatric facility or nursing home.

Arizona’s disability services system is, like every other state in the country, primarily focused on providing “community-based” support rather than “institutional”. 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 strange that the Preventing Abuse & Neglect of Vulnerable American Act (introduced by two Arizona senators) does not apply in “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. They shouldn’t be subject to “community-based settings” the same scrutiny as ICF/IIDs. Why don’t they require that “community-based settings” post evidenced incidents of abuse online or allow outside advocates to decide their fate in Congress?

Proponents of deinstitutionalization would argue in response that institutional settings are inherently prone to abuse and neglect. Unreported abuse is a common problem in “community-based” settings. 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 showed that

% of critical incidents of abuse and neglect in group homes go unreported.

Group Home beneficiaries are at risk of serious harm. OIG discovered that safety and health policies were not being adhered to. Group home beneficiaries were at serious risk of severe harm if they failed to follow these procedures and policies. 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 serious problem in the industry of disability services, from state schools to independent living arrangements, why are disability rights groups supporting a bill which only targets abuse within “institutions” but not “community-based settings”?

They want to shut down ICF-IIDs. Several of the nonprofit groups endorsing the PANVAA bill are opposed to “institutionalization.” They have led the fight to end ICF/IIDs and spearheaded decades of effort to eliminate all institutions and “inject” people with disabilities into the community. These groups would have the chance to portray “institutional” settings in a negative light, as there are no similar legislations that would apply the same public reporting standards for “community-based” settings.

Abuse can be very severe, especially for people with I/DD who are particularly vulnerable to being abused. It is worth celebrating any effort to reduce abuse or neglect. Nonprofit groups who spend their time trying to get the rest of I/DD people living in institutions to move into “the community,” by emphasizing ICF-IIDs, are able to use another tool in their arsenal.