The North Carolina Department of Health and Human Services, including the Division of Health Services regulation that monitors adult care homes, is housed on the campus of the former Dorthea Dix state mental hospital in Raleigh. Frank Taylor / Carolina Public Press

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Time is winding down for North Carolina health officials to make substantial improvements in services for adults with mental illness, required under a 2012 settlement with the U.S. Department of Justice.

The state has until July 1, 2021, to achieve quantifiable requirements under the settlement. According to Marti Knisley, the independent reviewer assigned to observe and report on the state’s progress, the state has made dramatic progress in some areas, but not in others that will be essential to meeting its legal obligations.

Knisley noted in her 2018 report released Oct 31, her fourth annual report overall, that the state has agreed to take steps to “prevent inappropriate institutionalization” and provide needed support and services to individuals by using an “individualized person-centered planning approach” to assist people at risk of entering adult care homes or a state psychiatric hospital. The goal of this agreement is to help these at-risk individuals to “get services and housing in the most integrated setting appropriate to their need.”

A key requirement of the settlement is that the state create 3,000 housing slots for these individuals by July 1, 2021. Knisley’s report predicts that the state will “fall just short” of meeting that requirement.  However, with a slight monthly increase in the number of slots filled, and a reduction of the number of people who are leaving such housing, Knisely predicted the state still could potentially meet this requirement by the deadline.

The challenge the state faces is that such improvements require substantial system changes.

“The state has yet to make all the system improvements and changes necessary to comply with the Settlement Agreement,” Knisley wrote in the report.

After describing modest improvements that will help the state meet some requirements under the settlement, Knisley noted the limiting factors the state faces.

“Progress toward compliance in meeting community-based mental-health services requirements has been severely hampered by budgeting challenges, a limited service array, very slow progress on service definition changes, rates and improvements, and an underestimate of the type and intensity of service needs,” she wrote.

“Overall, there is a lack of clarity on policy, lack of quality metrics, and slow follow through on major initiatives across all of the threshold requirements.”

Adult care home issues

The placement of substantial numbers of North Carolinians with mental illness in adult care homes, as well as the uneven quality of care at those facilities despite state and county oversight continued to be a concern.

“(Adult care homes) continue to range from being well-maintained and inviting places to live to less-well-maintained homes that are not inviting,” Knisley wrote. “The less inviting homes are often loud, with many residents walking aimlessly up and down the halls, sitting in wheelchairs or in TV rooms, or outside sitting near the front door.”

She also noted specific concerns with the state’s oversight apparatus. Regional governmental agencies responsible for managing behavioral health services, called Local Management Entity-Managed Care Organizations or LME-MCOs, are responsible for reporting complaints about violations of resident rights at adult care homes.

But Knisley reported that DHHS has consistently been finding complaints unsubstantiated. “None of the complainants (LME-MCOs) reported being interviewed prior to the finding being considered unsubstantiated,” she wrote. “Without additional information regarding response to these complaints, the state cannot be found in compliance with this provision.”

In 2017, the U.S. Department of Justice accused the state of noncompliance with the settlement on several fronts, some of which related to the large number of adults with mental illness diagnoses whose primary housing option seemed to be adult care homes, as Carolina Public Press reported at that time.

That litigation resulted in modification of the settlement agreement in late 2017, which clarified several points of understanding between the state and federal governments.

Openness to change

Knisley talked Friday by phone with Carolina Public Press about this year’s report and what changes she’s seen over time.

“’Did you see improvement? What do we need to do?’” are questions Knisley said she has typically received from state officials each year. “Except after the fourth report, when I write the same thing, they tend not to ask any more.”

The state needs to be able to show that it has provided appropriate housing for 3,000 people. To do that the state has needed to come up with multiple changes to services. “There are improvements and additional resources that are going to have to be made available for the state to meet all of the requirements in the settlement agreement,” Knisley said.

The state still hasn’t taken some of the most essential steps toward meeting that goal with less than three years left, she said.

“The last major substantive changes that need to be made are in the availability, array and intensiveness of services, so that people can move and be active in the community,” Knisley said. “I have not yet seen the state make those changes.”

Other problems involve potentially promising programs that lack sufficient documentation to show they are sustainable. This is a key concern with a program called IPS-SE, for Individual Placement and Support – Supported Employment, which has been used successfully elsewhere and has been adopted by North Carolina.

Knisley described IPS-SE as “one of the best services the state has offered, in terms of helping a person living the fullest life.”

“If it’s a new service, you need to do a good business plan for the sustainability of that service,” Knisley said. “We have said for four years, you need a full business plan for this system to be sustainable. Each year, the state takes some action to improve this service… However, they have not done that sustainable business plan.”

Despite the concerns that North Carolina has important work remaining, Knisley praised several state initiatives over the past year that made progress on issues where she had said “they really needed to work on changes.” Those include a new prescreening program for those who begin receiving mental health services and a recent change to contract requirements for people discharged from state hospitals.

State’s response

Asked last week about the state’s reaction to annual report, Kody Kinsley, the state Department of Health and Human Services Deputy Secretary for Behavioral Health & Intellectual and Developmental Disabilities, issued a statement:

“DHHS continues to be strongly committed to meeting requirements of the (U.S. Department of Justice) settlement agreement while building a system that assures the vision of a community-based system is in place for people with disabilities,” Kinsley said.

“We are working closely with all of our partners and stakeholders, and are adjusting our strategies as we identify opportunities to improve. We are confident that this approach will result in a substantial compliance with the settlement.

“Social determinants of health are an important factor in building a sustainable system of supports, and DHHS is committed to working with partners across divisions and departments to develop a system that is more cohesive and provides the most integrated care to assist individuals to live in their communities as independently as possible.”

Previous reporting

  • “Study questions value of star rating system for adult care homes,” Oct. 10, 2018: Link
  • “A federal case: Housing for mentally ill adults pits NC against US government in ongoing legal battle,” July 31, 2017: Link
  • “Questionable care: Is North Carolina’s system for housing those with mental illness failing?” series beginning in July 2017: Link
  • “Mentally ill sent to Nutz R Us despite name, inspections,” June 23, 2016: Link
  • “Nutz R Us abandons name,” June 20, 2016: Link

Editor’s note:  As the text of the article has now been corrected to say, LME-MCOs report complaints about possible violations of adult care home residents’ rights to DHHS, but complaining LME-MCOs told Knisley that DHHS ruled these complaints unsubstantiated without interviewing the complainants. As initially published, the article described the role of the LME-MCOs in this process incorrectly.


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Frank Taylor

Frank Taylor is the managing editor of Carolina Public Press. Contact him at ftaylor@carolinapublicpress.org.

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