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What to Know About the Community Services Court Ruling in North Carolina

At a Glance

In this post, we share a recent ruling in a case based in North Carolina around community-based disability services.

We get into some practical implications of the ruling and what it means for individuals and families already on the waiting list in North Carolina.

We are happy to report some exciting news for autistic people and families in North Carolina who want more access to community services! 


On November 2nd, 2022, the NC Superior Court ruled in Samantha R., et al. v North Carolina and the NC Department of Health and Human Services, which was filed “on behalf of people who were institutionalized or risked institutionalization because the state failed to make sure they could get essential services in their communities.” 


The lawsuit was filed on behalf of the plaintiff by Disability Rights North Carolina (DRNC), which is also responsible for the helpful article linked in the above quote and for hosting a copy of the ruling itself. 


If you live in North Carolina, you may have heard about a summary judgment in this case a couple of years ago and wonder if this ruling has any real practical implications.

 

The good news is: yes, this ruling should have real and practical implications for intellectually/developmentally disabled (I/DD) individuals and their families in North Carolina. 


The bad news is that it will take some time to correct the established problems that this ruling is meant to address. But the upshot is that the court expects NC DHHS to solve the problem of lack of essential community services, so that once people are off the waiting list we will never need a waiting list again.


In a nutshell, the November 2nd ruling says that NC DHHS was already established to have unnecessarily “institutionalized or placed at risk for institutionalization” I/DD individuals, and that systemic relief was necessary, including adopting a “specific and measurable plan” for reducing use of institutional settings. 


Despite working with a consulting group to create such a plan, the court has determined that no plan was ultimately put forth and has set its own benchmarks for compliance. 


The court addressed four primary areas of compliance and accompanying expectations, which we will outline below:

Transition Individuals from Institutional Settings to Community Settings

Timeline: Transfer 3,000 Eligible Individuals Within 9 Years, Cessation on New Admissions Within 6 Years


The court’s initial summary judgment acknowledged over 4,000 individuals who are currently institutionalized, and this benchmark applies to “those who do not oppose a community-based setting and for whom a community-based setting is appropriate.” To be clear, the impetus is on individuals who want to be institutionalized and for whom it is not a medical necessity to say that is what they want. 


People who don’t say that and for whom institutionalization is not medically necessary should be transitioned out of institutions to community services that meet the given individual’s essential needs. 


Likewise, the court explicitly states that no individual who does not wish to be transferred should be transferred. 


Starting in 2024, NC DHHS will need to “divert or transition individuals with I/DD from institutional settings to community-based settings” in increasing numbers each year. 


Finally, the court notes that NC DHHS will “reduce its reliance on institutional settings based on the informed choice of residents.” 


In other words, the court expects NC DHHS to only keep as many institutional settings as are required by the people who ask for them or medically need them.

Provide Services to the Entire Medicaid Waiting List

Timeline: Reduce Wait List to Zero Within 10 Years


The court refers to this list as the Registry of Unmet Need, and sets benchmarks starting in July 2023 on reducing the number of people on the list. 


This is an important distinction from the above section, which required an increasing number of transfers. Bear in mind that while NC DHHS works to comply with this ruling, people will also continue to apply for Medicaid Waiver slots but that NC DHHS will still be expected to have the wait list down to a certain number regardless of how many new people are added.


It’s also crucial to note that while the order has allowed for some flexibility in how NC DHHS obtains funding to meet these benchmarks, they are not permitted to reduce numbers on the registry by imposing new requirements either for becoming or staying included on the list. 


The court’s important benchmark is that “individual’s needs are met and fully-funded” and allows for examination of non-waiver sources of funding on a case-by-case basis.

Address the Direct Support Professional (DSP) Deficit

Timeline: To be determined in future ruling.


In its ruling, the court seems to hint that there is a little more complexity to ensuring compliance on this portion of the ruling. It has required NC DHHS to share data on Medicaid and state-funded service hours as well as the “status of any effort to establish a professional credentialling process.” 


The court has alluded to the necessity of both better incentives and a credentialling process in addressing the state’s DSP shortage, but seems to require more data from the state to make a determination on some fair benchmarks for improvement.

Quarterly Reporting

Timeline: Every three months.


NC DHHS will issue a report on its compliance progress every three months, starting with a report on the 4th quarter of 2022 that is due March 15, 2023.

Common Questions and Concerns

Does that mean I will have to wait 10 years to have my needs addressed?

Perhaps the main frustrating part of this ruling is that there is going to be a degree of “it depends” in any realistic answer to this question. But a helpful way to think about it for the time being is “not necessarily!” To start, although the court requires systemic relief on a timeline of 10 years, the judge sets benchmarks for NC DHHS to meet every single year. 


That means even if you are not one of the first to receive relief from this case, there is a very good chance that your total wait time is going to be cut down considerably. Unfortunately this does mean some people will be left waiting when they have already waited for so long. 


Our hope is that NC DHHS will find a way to comply with this ruling ahead of schedule, but given that the judge had to impose benchmarks on NC DHHS two years after the initial ruling we do not want to put too much stock in the possibility of that happening.

Do I need to do anything differently?

If you are on the Medicaid waiver list, the most important thing you can do is continue to make sure you stay on the list! If you are not on the list yet it is still advisable to apply as soon as possible. 


While technically speaking the ruling also defaults to community services unless an individual expresses a desire to be institutionalized or must be institutionalized out of medical necessity, it cannot hurt for institutionalized individuals who do want community services and their support networks to make sure NC DHHS knows their preference. 


In short, if you have already made your preferences clear to NC DHHS then you have done your part, and the responsibility is now on them to do a better job of providing the services that state law says they should be providing.

What does this mean for housing?

In theory, this ruling should mean more housing over time. Even though the NC DHHS is allowed some flexibility in how it meets its benchmarks, it is hard to imagine them doing so without addressing housing in some meaningful way. 


The best way to stay up to date on housing specifics will likely be through NC DHHS’s quarterly reports, the first of which is due on March 15, 2023 and should be available on their website.


One portion of the ruling worth keeping an eye on is that the benchmark for institutional transition does allow for up to 75% of any yearly goal to be the result of converting institutional service model settings to community service model settings. 


It remains to be seen exactly what this will entail, and we may not have a great idea of exactly what it looks like until we hit some of the early deadlines starting in 2024.

What does this mean for DSPs?

As noted in the above section, this ruling primarily lays out the initial steps for setting appropriate DSP benchmarks and does not yet offer much in the way of concrete steps. 


The ruling does make clear, however, that this plan is expected to be forthcoming and can be added to the ruling. Although DSPs are not included in the ruling’s mandatory reporting schedule, those benchmarks can be added later once they are determined.


For people who have been navigating the system in NC, we know that there are still plenty of unanswered questions left by this ruling. 


But overall we see reason to be optimistic that we will be getting real answers to those questions over time, and that those answers will lead to measurable better outcomes for intellectually/developmentally disabled people in North Carolina. 


Please spread the word to help make other NC families aware of this important development, and we will do our best to keep you updated as more news rolls in!

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