Thousands of adults with mental health disabilities languish in ACHs
Media Strategist / Senior Writer
Throughout North Carolina, people with mental health disabilities are unnecessarily institutionalized and isolated, often in areas of the state that are far from their homes, families, and friends. People who once had more capabilities and dreams for themselves languish and lose hope, cycling in and out of emergency rooms, hospitals and Adult Care Homes (ACH) because they aren’t getting the services and supports they need and have the right to receive.
The reason many of these adults wind up in these ACHs, also known as assisted living facilities, is because NC’s Managed Care Organizations (MCOs) should be, but are not, providing the services and supports people need to live successfully in the communities of their choice. By extension, the state ultimately is at fault because it has failed to hold the MCOs accountable for the millions of dollars it gives them to provide community services.
It doesn’t have to be this way.
Since 2012, North Carolina has been operating under a settlement agreement with the US Department of Justice (DOJ) regarding this illegal and inappropriate warehousing of thousands of adults with mental health disabilities in adult care homes, in violation of the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision.
Earlier this month, a federal judge extended that settlement agreement for two more years because the state continues to fail these residents.
Living in an ACH is more expensive than community supports and services. It is unnecessary, unwanted and tragic. And in a devastating development, during the pandemic the state’s bias toward institutionalizing people has resulted in horrific loss of life, as COVID-19 infections and deaths disproportionately hit institutions such as ACHs.
It doesn’t have to stay this way. North Carolina can and must do better. It is way past time for the state to rid itself forever of its institutional bias.
DRNC’s 2010 investigation and the settlement
DRNC staff have been advocating for community inclusion since the agency became NC’s Protection and Advocacy (“P&A”) organization in 2007. As the state’s P&A, we have federal authority to monitor conditions in facilities like ACHs and ensure residents and staff know residents’ rights while in these facilities. Our authority also allows DRNC to conduct investigations into abuse, neglect and exploitation of people with disabilities.
The settlement agreement is the result of a 2010 DRNC investigation into conditions at ACHs, following complaints and reports we received about people with mental health disabilities inappropriately warehoused in these settings. Eight law students from UNC-Chapel Hill assisted DRNC staff in monitoring 15 ACHs across the state. Following that investigation, DRNC filed a complaint with the US DOJ, alleging this warehousing was in violation of the ADA and Olmstead decision.
In 2011, the US DOJ substantiated our complaint and launched its own investigation. A year later, the state agreed to make changes following negotiations with the US DOJ that resulted in the appointment of an “independent reviewer” who would make periodic reports to the federal judge who has oversight of this settlement agreement. As part of the settlement, the state launched the Transitions to Community Living Initiative (TCLI).
The state failed to uphold its end of the settlement
The state agreed to certain benchmarks in the settlement agreement, which was originally scheduled to expire Summer 2020. But the state couldn’t meet last summer’s deadline, so the federal judge overseeing the settlement agreement allowed NC until this summer to meet its obligations.
Despite the extension, the state still can’t meet its obligations, according to the independent reviewer’s most recent report. That opened the door for the US DOJ to sue the state. However, as noted above, earlier this month the state agreed to a two-year extension, and the federal judge approved that. So, for now, no federal lawsuit.
What about those forgotten in ACH’s?
Meanwhile, NC’s institutional bias means hundreds of individuals with mental health disabilities suffer in isolation, wondering if they will ever be allowed to fully live their out their lives, to have a family, a community, a purpose in life.
During DRNC’s investigation in 2010, one of the residents told a law student that he felt like he was in jail. Sadly, this is a common complaint we continue to hear from residents in ACHs.
Unfortunately, now we must wait and see if the state will actually fulfill its promises and obligations as articulated in the ADA and the Olmstead decision. Will the state finally ensure MCOs provide a robust system of services as is their mission, so people with a mental health diagnosis have the same human rights as others? Time will tell. In the meantime, DRNC will continue using all the tools at our disposal to fight for equal and human rights of North Carolinians who have been pushed away and (mostly) forgotten.
Learn about the Transitions to Community Living Initiative, which helps people with mental health disabilities living in adult care homes transition to the community.