On Nov. 2, 2022, Superior Court Judge R. Allen Baddour entered an injunctive relief order in Samantha R., et al. v North Carolina and the NC Department of Health and Human Services. The case, which was filed in May 2017, challenged the lack of adequate home and community-based services for people with intellectual and developmental disabilities (“I/DD”).
In February 2020, the Court found that the state is violating the rights of people with I/DD to live in integrated settings if they choose. Since then, the judge has given the state time to develop a plan for correcting its violations of the state Integration Mandate – the state law version of the Olmstead case.
The state failed to show that it has a plan to address serious and persistent gaps in NC’s I/DD system, or any specific measurable goals to fix those gaps, so Judge Baddour’s most recent order sets out measurable outcomes for what the state must accomplish. It does not dictate how the state achieves the required outcomes.
All parties to the case agree that there must be a more robust community-based service system. Compliance likely will require significant and sustained effort by the state at a level that far exceeds any previous efforts at reform of the I/DD system. Here is what the Order requires:
- The Innovations Waiver waiting list must be eliminated in 10 years. There are currently over 16,000 people on the waiting list. The Order requires that these 16,000+ people, and those who qualify for the waiting list over the next 10 years, must be provided with the services they have been waiting for. The required reductions in the waiting list are designed to occur steadily over that 10-year period, although that pace may be accelerated by the state. We expect that steady reduction in the waiting list will mean steadily reducing wait times for a slot. It will also require significant expansion of access to services and providers (see below).
- The state must effectively resolve the shortage of Direct Support Professionals (“DSP”) who provide community-based support. The Technical Assistance Collaborative (“TAC”) has advised NC DHHS – and NC DHHS agrees – that the DSP issue can be remedied through better compensation and professionalizing the workforce. The Order requires the state to be accountable for solving workforce issues and closing the service gap. The parties will review available data and propose specific benchmarks for the Court to adopt.
- The state must divert or transition 3000 people who want to leave or avoid institutional settings over the next 8 years, and cease new admissions after 6 years, except for respite or short-term stabilization. The Order sets an annual benchmark which the state can meet by employing programs and processes it has used in other contexts, such as In-Reach and diversion programs. Ultimately, the success of this effort will require creating a more robust community-based service system to serve people who want to live in the community.
- The state must provide quarterly reports regarding each measure ordered by the Court, and post data to its website so that the disability community has access to timely information about the status of the state’s progress. The state will report detailed information to DRNC (Disability Rights North Carolina) and the Court to allow for verification and tracking.The Order does not require closure of specific facilities. The lawsuit did not seek to close either specific institutions or categories of institutions. As we have seen in other states, over time, providers may start adjusting their practices to meet changing needs and desires. With proper planning, these adjustments can benefit everyone. For example, operators of private ICF (Intermediate Care Facilities) for people with I/DD can transition to community-based services and continue to operate profitably. In this way, people with I/DD who are currently housed in inappropriate settings that do not meet their needs can be served more appropriately. Another example is adult care homes, which are not designed to provide support and enrichment for people with I/DD but which often accept people with I/DD even when those settings limit options or quality of life.
The state has said for many years that it wants to, and intends to, reduce reliance on institutional settings and serve more people in the community. The Order holds the state accountable to do just that – provide community-based services for more people with I/DD.
Frequently Asked Questions
Q. How can the state expand Innovations Waiver slots given the DSP shortage?
A. The Order does not dictate what the state must do to come into compliance; it merely sets measurable benchmarks to determine whether the state is meeting its obligation – and stated intention – to serve people with I/DD in the most integrated setting appropriate to their needs. However, it is apparent to those familiar with the system that the addition of Innovations Waiver slots will require real changes in how we staff critical direct care work. Specifically, DHHS will have to fulfill its promise to professionalize the DSP workforce and make long term commitments to competitive pay. A genuine investment is needed in order to provide a stable foundation upon which these expanded services can be built. Waiting for the DSP shortage to resolve itself has not worked.
The state has many workforce development resources – such as the community college system. As a state, we tout these resources in recruiting businesses. The state can take a similarly robust approach to workforce development when it comes to building our human services infrastructure.
The state can also work toward addressing the DSP shortage by actively enforcing its contracts. Currently, DHHS contracts with LME/MCOs for the delivery of behavioral health services to people with I/DD. A key obligation of the LME/MCOs – one of the reasons they are paid to manage care – is to develop and maintain adequate provider networks. The LME/MCOs have been given tools to do this work. For example, they set rates and should pay providers the rates necessary to attract and retain employees, including enhanced rates if they are needed based on an individual’s support needs or geographic location. The state must hold LME/MCOs accountable if it is to meet its obligations under the Order.
Q. What will this cost? What will the economic impact be?
A. Expanding access to services, whether through Innovations Waivers or other comparable Medicaid-funded supports, will come with at least a 2-to-1 federal match for each state dollar (i.e., the state will pay 1/3). Put another way, the state will draw down federal funds that would not otherwise be coming to the state, just as would be the case with Medicaid expansion.
As detailed below, adding funding for these services means adding jobs. Investment in high quality jobs is a way to create economic opportunity and generate economic activity, just as the state has done in offering about $1.2B in incentives to VinFast to locate in North Carolina and create about 7,500 jobs.
A similar investment in Innovations Waiver services would fund the entire waiting list for three years. A gradual increase in Waiver slots – which is what the Order calls for – can create a realistic and sustainable expansion of the workforce. This is just an example; the larger point is that the funding associated with compliance should be considered in light of the overall economic benefits, and not just by placing a price tag on providing legally-required services for people with I/DD.
Similarly, increasing DSP pay to develop the workforce will create savings elsewhere, since approximately 42% of DSPs themselves now earn so little that they and their families rely on government benefits. When DSPs start earning better compensation and receive professional credentials, their ability to support themselves and their family on their own salary will increase, while costly turnover and re-training should decrease.
Another example: Because the cost for institutional care is significantly higher than community-based support, there will be savings realized when individuals choose these less costly services.
The exact economic impact of these changes is unclear and depends on the rate at which services are expanded, community options are developed, and DSP workforce changes (increasing pay, credentialing, adding positions) are implemented. In the meantime, delays have negative economic impacts.
It is estimated that, nationally, $470 billion per year in unpaid services are provided by family caregivers.1 This is 2.5 times more than Medicaid spending on long-term services and support. The economic consequences of this are damaging to local communities, and echo what we know anecdotally: family and other unpaid caregivers are leaving or staying out of the workforce in order to provide unpaid support, rather than working for pay and providing a resulting boost to the local economy through spending of these wages.
Q. How many jobs may be created as a result of this Order?
A. Providing support and services to thousands more people with I/DD will require a substantial expansion of the DSP workforce, along with many other health care, administrative and related positions. The exact number will depend on how quickly services are expanded and the number of people served. By one rule of thumb, each Waiver slot produces 1.25 – 1.3 jobs.
This translates into more than 18,750 jobs produced over the next decade. In addition, people who currently have an Innovations Waiver slot are often not able to fully staff critical caregiving positions because the work requires specialized care in an industry whose wages are comparable to pay for fast food positions. Since the Order requires the state to close that gap, these vacant positions must also be addressed through workforce development and LME/MCO accountability. These are jobs that cannot be outsourced to other states or countries.
Q. Does the Order interfere with the Olmstead Plan that DHHS adopted?
A. No. The Order does not require DHHS to change the Olmstead Plan. The Order provides accountability for the state to achieve progress. The Plan indicated an aspiration for providing more people with I/DD an opportunity to stay or return to the community. The Order ensures that there are specific and measurable goals by which the community – and the Court – can determine whether the state is succeeding.
Q. What facilities are covered by the Order? Does the Order require facilities to close?
A. The Order does not require any institutions to close. The term “institution,” as used in the Order, means Intermediate Care Facilities for people with I/DD (ICFs) and Adult Care Homes. The ICFs covered are both private ICFs and the three state-operated Developmental Centers.
The Order does require that the state stop admitting people to institutions after six years, except for respite or short-term stabilization. This is consistent with the recommendation made by TAC: “Institutions are not residences; their purpose, if deemed necessary, should be to provide specialized services that cannot be accessed in the community. Such services should be provided only so long as necessary to stabilize individuals in order that they can return successfully to the community.” An Assessment of the North Carolina Department of Health and Human Services’ System of Services and Supports for Individuals with Disabilities, Technical Assistance Collaborative, April 30, 2021, p. 116.
Q. If there are fewer people in facilities, won’t some of those facilities close?
A. As noted above, some private facilities can convert some or all of their focus to community-based services. Others may choose not to do so and may close if residents voluntarily opt for alternative community-based services. It would be wholly improper and illegal for the state to deny people access to community-based services in order to protect or support specific facilities or industries. As explained elsewhere in these FAQs, the state should realize a significant net positive economic impact based on the expansion of opportunities.
Q. What about people who don’t want to leave their facility?
A. The decision to leave is up to the individual. Often, this will include guardian involvement. No one will be required to transition from an institution against their will, or if there are medical or other health reasons.
Many people have remained in facilities because of the lack of reliable community-based services; the development of community-based services will have to be a part of the process of ensuring that people can make informed decisions about transitioning to the community with the support they need. We cannot expect people to voluntarily choose community-based services unless the state makes good on the requirement to have those services available.
There may come a time when a facility closes, and the remaining residents must find a new place to live. This happens now for many different reasons. In those cases, each person is entitled to assistance with making an informed decision about the available options, including any available community-based and facility-based options.
While some may object to even the potential for such changes, we cannot allow the wishes of those who do not want even the possibility of change to override the desire – and right – of those who want to live in their own homes or other community settings. People’s right to choose a community-based option cannot be sacrificed to another person’s desire to ensure the continued operation of specific institutional settings.
Q. What about the loss of jobs in these facilities?
A. To comply with the Order, the state will have to expand access to services. This will mean more jobs, not fewer. Again, facility operators can transition facility-based jobs to community-based support, as many have done here and in other states.
Q. What about state employees at the Developmental Centers?
A. As noted above, there is no requirement to close facilities, and therefore no need to eliminate the jobs held by those working in Developmental Centers. TAC recommended that the state begin engaging employees at Developmental Centers in training and supporting community-based staff because the quality of community-based services and supports needs improvement in many areas. TAC Report, p. 124. Recognizing the need to build a higher quality, statewide community-based workforce, TAC’s proposal values the expertise of state staff and the role they can play in building a stronger community-based system.
Many remember a time when it was common practice for state staff to provide technical assistance and advice to community-based providers, and it could be again. The state may also adapt Developmental Center roles to give state staff ongoing roles in community-based services. Nothing in the Order changes the status of Developmental Center employees; the question is whether the state will adapt these roles over time as TAC recommended. The reason many people want to protect state jobs is that they generally come with good pay, job protections, and benefits and are often some of the better jobs in rural areas. DRNC supports high quality jobs for well-trained staff in every setting where people with I/DD are served. This should be the foundation of the I/DD service system. These jobs should be available in all of the places where people with disabilities live.
According to data supplied by DHHS to the National Core Indicators study, 53% of DSPs in North Carolina are Black and 72% are women. There are significant race and gender equity issues associated with the state’s reliance on these workers to perform critical caregiving jobs at wages that are comparable to pay for fast food positions.
There are Developmental Centers for people with I/DD in three North Carolina counties. There are people with disabilities in need of support in all 100 counties in North Carolina. An integrated service system would serve people where they are, using staff from the same communities.
Over the years, there have been fewer and fewer small providers, particularly in rural areas. Many of these providers were Black and women-owned businesses. A more geographically diverse workforce can mean more local providers with the cultural competence to serve beneficiaries in their communities.
The result of this Order should be more jobs, not fewer, because the Order requires expanded access to services, which in turn requires the building of a qualified and appropriately compensated workforce. It also requires the state to view these community-based positions as valuable professional caregiving roles and ensure that they are supported and compensated to the same degree as state employees. Parity and equity require it.
Q. Can the state appeal the Order?
A. The state has long promised to work toward compliance with Olmstead and the full integration of North Carolinians with disabilities. DHHS explicitly stated in its Olmstead Plan that it would seek to shift resources from congregate settings to home and community-based services. Similarly, DHHS has said for years that its goal is to increase access to waiver slots and other services for people with I/DD.
Unfortunately, the position taken by DHHS and the state in this case has been inconsistent with these public statements. The state has resisted accountability and enforcement of the rights of people with I/DD. For example, while assuring the community of its commitment to address the Registry of Unmet Need, the state argued to the Court that DRNC’s proposal to address the waiting list was unacceptable, telling the Court in one brief: “DHHS strongly disagrees with DRNC’s proposal to eliminate the waiting list over 10 years.” The state argued that “Plaintiffs’ proposal calls for a Registry of zero by 2032. This is not a realistic goal, and it should be rejected outright.”
The state has also resisted accountability for reducing reliance on institutions. In response to DRNC’s proposal for reducing involuntary institutionalization of those who want to live in the community, Defendants argued: “Overly aggressive goals and too-rapid change carries risks of a backlash, including alienating stakeholders, owners of Adult Care Homes (“ACHs”) and Intermediate Care Facilities (“ICFs”), and others.”
The state was concerned because “owners of ACHs and private ICFs may fear that de-institutionalization initiatives may result in lost revenues, and they may push back strongly.” DHHS should not consider facility owners to be the most important “stakeholders” in the I/DD system and should not be concerned with lost revenue at the expense of the ability of citizens with I/DD to live in the community. The state should be concerned, instead, about “backlash” from the disability community – the people they are supposed to serve.
While an appeal by the state would contradict its promises to the disability community, an attempt to appeal is possible based on the litigation positions taken by the state. An appeal would be a signal to the disability community that the state is not fully committed to its expressed goals. If the state attempts to appeal, we will call on the disability community to condemn the hypocrisy and the delay that an appeal could entail. People with I/DD have already heard enough promises and have been waiting too long.