Beyond institutions: Can new plan help NC residents with intellectual and developmental disabilities?

North Carolina public health officials are fine-tuning government strategies to give people with intellectual and developmental disabilities more options for care outside institutional settings.

The state Department of Health and Human Services has been collecting comments for the past three weeks on its proposed blueprint for the rest of 2024 and 2025 to improve the lives of people with disabilities and brain injuries, along with those of their families and caregivers.

It’s the Olmstead Plan in recognition of the landmark 1999 U.S. Supreme Court decision that found it discriminating and unlawful to segregate people with disabilities without opportunities for work or play in their communities.

The blueprint, under development and set to be published in April, is an extension of the state's ongoing effort to comply with that ruling.

"The Olmstead Plan is about empowering individuals with disabilities with the services and supports they need to choose how and where they want to live in their communities," Debra Farrington, DHHS deputy secretary for health equity and chief health equity officer, said in a recent department news release. "Our goal is to ensure the right resources at the right time and in the right setting so North Carolinians with disabilities are able to thrive in their daily lives."

Kody Kinsley, DHHS secretary since 2022, counts among his priorities more inclusive care choices for people with disabilities.

Last year, he worked with the governor and state lawmakers to obtain a historic $835 million public investment in behavioral health and home- and community-based supports.

Some of that investment went to Medicaid Innovations Waivers, which uses federal and state funding to provide community services for individuals with intellectual and developmental disabilities, traumatic brain injuries and others at risk of being placed in long-term or institutional care facilities. The idea behind the Innovations Waiver program is to allow people to receive the services they need to remain where they want, whether it’s at home with their families, living with others, or living in an independent setting.

Plan priorities

The new funds in the state budget also went to beef up the workforce that helps with such care, not only through higher pay reimbursement rates but also by creating more educational opportunities with hopes of plugging personnel shortages across the industry.

The plan for 2024 and 2025 focuses on five key areas:

• •Increasing opportunities for more community inclusion through access to Medicaid waiver home- and community-based services.
• • Providing more and better care opportunities that could help people stay in the community and avoid the need to enter institutional or congregate care settings.
• •Offering better access to housing, transportation, employment and other daily living needs that also can contribute to a more robust experience within a community.
• •Establishing programs and services to help young people on the cusp of adulthood prepare for employment opportunities.
• •Strengthening opportunities for people with disabilities transitioning from prisons and jails to return to communities where they could find places to live and work.

Significant court ruling

The plan will be published nearly 18 months after a sweeping court ruling by Judge Allen Baddour in the Samantha R case, a challenge filed by Disability Rights North Carolina that claimed the state was not providing enough community- and home-based services for residents with intellectual and developmental disabilities.

Disability Rights argued that while there had been planning to provide more care outside institutional and congregate care settings, the services were not coming to fruition quickly enough.

Baddour's extensive order set timelines for meeting those goals, a decision appealed by DHHS, in part because it established 2028 as the date for ending new admissions into long-term or intermediate residential care facilities. That cutoff point and other parts of the order caused backlash from some of the very people the judge's findings were meant to help.

So on May 30, 2023, Disability Rights went back to Baddour and asked him to modify his order to remove the portion that blocked new admissions to private intermediate care facilities after 2028.

That case has been tied up in the appeals court process and potential settlement talks, but while the uncertainty lingers, the judge temporarily halted the implementation of his ruling.

That hasn't stopped planning at DHHS.

Nor has it prevented the department from underscoring some of its progress.

Waiting for waivers

The traumatic brain injury waiver program has been expanded to Orange and Mecklenburg counties; previously, those waiver services were only available in Cumberland, Johnston, Durham and Wake Counties. All of these are counties served by Alliance Behavioral Health, the local mental health management agency for that region.

DHHS has secured approval for telehealth services for some community support and employment programs. People now can have access to seven home-delivered meals — one per day. 

There is also some flexibility in where people, on occasion, can receive services, such as in hotels, churches, shelters or other approved sites.

The General Assembly added 350 new slots for Innovations Waivers, giving more people access to community-based services.

Still, there are people on the waitlist for the benefits.

As of December, according to a draft of the plan, there were 17,530 people on the Innovations Waiver waitlist with only 14,736 available slots.

Access to waivers for people with traumatic brain injuries remains limited, too, even in the few counties where service is available.

Some doubt community-based system

As the state works to ensure that more community-based care is available, some family members of people with intellectual and developmental disabilities and severe mental illness have raised concerns about "distrust of the community-based system," according to the plan, saying they're "concerned that the system will not provide the necessary services and supports to keep their loved ones safe and healthy."

"Some providers of congregate residential settings and sheltered employment have expressed reluctance regarding the implementation of different approaches to services absent a viable business model, inclusive of adequate funding, for transition," the plan further states. "The General Assembly has questioned the allocation of additional resources absent data on the outcomes achieved from current investments in the community-based system."

The department is working with the nonprofit Technical Assistance Collaborative  and the Human Research Services Institute to develop proposed actions with outcomes that can be measured with scientific data.

DHHS has developed dashboards to show where existing services are, and officials with the agency said they’re trying to adapt to the changing needs of the population. The goal is to include many stakeholders in the honing of the blueprint.

"The Olmstead Plan is a living, breathing document," Kinsley said in his introduction. "We continue our journey towards inclusive communities welcoming of all and advised each step of the way by those with lived experience, their families, and diverse stakeholders. ... North Carolina champions the right of all people with disabilities to choose to live life fully included in our communities. We trust that this Plan will continue to be a shared lens that sharpens the focus of our work together."

This article first appeared on North Carolina Health News and is republished here under a Creative Commons license.