The disability community has been raising red flags regarding institutions for decades. We must continue to elevate the voices of disabled people to ensure they have community-based services in the community. We wish our community would have been heard and taken seriously as there are more reports coming out about the harmful practices of any institution. Just this month in June,  a report was issued about Psychiatric Residential Treatment Facilities (RTFs), Warehouses of Neglect: How Taxpayers Are Funding Systemic Abuse in Youth Residential Facilities? Everyone in IL must see this! Especially given that one of our very important core services in independent living is institution transition and preventing people with disabilities from entering institutions. More information is listed on the U.S. States Senate Committee on Finance’s page.

The report is about a two-year investigation of four major for-profit companies that reveal RTFs receive billions of dollars in federal funding – including Medicaid and child welfare dollars – and provide substandard care, and subject kids to abuse and neglect. The report calls for Congress, industry, federal government agencies, and states to raise standards for congregate care, strengthen oversight, and invest more in community-based alternatives. The NBC News report summarizing some of these findings is found here:

The report said there were “numerous” accounts of residential treatment staff members’ “dragging or throwing” children in their care, and pushing them into fences, walls and furniture,” based on the companies’ records.

“Residential treatment is relied on because it’s an alluring model if you don’t know what’s going on in there,” Reagan Stanford, an attorney with Disability Rights Arkansas, said during the hearing. “The facilities sell themselves as specialized providers with all the services a child will need and places for children with nowhere else to go, she said, “but the reality is not that.”

Dozens of youth rights advocates and people who’d been placed in residential facilities as teens attended the hearing. Sen. Mike Crapo, R-Idaho, the ranking member of the committee, addressed them in his opening remarks.

“To the victims in the audience and around the country who’ve suffered abuse and neglect in residential treatment, your experience is entirely unacceptable,” Crapo said. “Facilities entrusted with caring for our most vulnerable youth must be held to the highest standards and subject to routine oversight.”

In one incident the Senate report described, which was also detailed in a state investigation report obtained by NBC News, a female staff member at a Universal Health facility in Oklahoma admitted to molesting a girl in 2021 and said she planned to have “a more intimate relationship” when the child left and turned 18. The facility moved the staff member to another unit after patients reported the misconduct, but she continued to stand outside her victim’s window each night, according to the report. Universal Health told the committee the staff member was later terminated. 

A woman holding a sign that read, "Child Abuse Is Not Mental Health" cries
Youth rights advocates gathered at the Capitol to share their stories and push for reform.Mariam Zuhaib / AP

At an Acadia facility in Arkansas, according to the report, company records showed staff members simultaneously placed children in a seclusion room and chemically restrained them — which is prohibited by federal regulations — 110 times in 30 days. Acadia executives told the Senate committee that the facility employees had not been following company policy or government rules.

This issue is a significant concern for Independent Living. Unfortunately, it is not a new issue. This is why it’s essential to continue advocating to be heard, and why Independent Living, as one of the very few disability-led movements, is so important. For a long time, large for-profit companies have been running congregate living for people with disabilities. Prior to that, state-run institutions were responsible for the long history of institutionalization. Transferring the same practices, including physical restraint, isolation, heavy sedation, and more, from the public to the private sector has not resulted in any improvement.

With youth, much of this comes from parents who don’t know what to do regarding their children’s mental health. Parents fear for their safety or the safety of others in their community. They fear their children may hurt themselves. As the children grow the concern increases. Parents and youth often don’t receive all the alternative and unrestrictive options available, or there are significant barriers to accessing solutions. These youth need support to meet their mental health needs so they have a chance to transition successfully to adult life. And that support needs to happen at home and in the community, not in institutional settings.

Did you know there are home and community-based services for children under 21-years of age (including children on long waiver waiting lists)? All states must comply with Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit requirements to provide all medically necessary care to children in Medicaid, including community-based alternatives to RTFs, and are encouraged to take federal resources to build additional support for community-based services whenever possible (e.g., intensive care coordination to divert youth from these facilities and family-based services and supports).

When these children’s symptoms go untreated, their conditions worsen over time, leading to numerous adverse outcomes. These outcomes include recurring mental health crises, emergency room visits, involvement in child welfare and juvenile justice systems, as well as unnecessary institutionalization. As a result, states are also violating children’s rights under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

Home and Community-Based Services (HCBS) should be available in state plans and provisions. However, states often don’t address these concerns as deeply as needed. HCBS programs are defined and funded through these written state plans, regularly reviewed, and updated. How has your CIL been involved in providing feedback? If this is something you are not involved in, you should reach out to your state’s Medicaid agency to begin making relationships and getting a seat at the table. Otherwise, these plans may be created about us, without us. Consider how HCBS funds CAN be used. It never has to be congregate living. What is your CIL or SILC doing to advocate for HCBS, including EPSDT?

Warehouses of Neglect…

One thought on “Warehouses of Neglect…

  • June 25, 2024 at 1:04 pm

    Thank you. But it does no good for folks in IL to speak up and challenge systemic discrimination when there is so much retaliation and when many in IL do not even know the definitions of “institutions.” Just sayin…


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