By Taylor Knopf and Rose Hoban
In a sweeping judgment handed down last week, a Superior Court judge ruled that the state of North Carolina needs to provide services to people with intellectual and developmental disabilities in the home settings that they choose.
In his order, Judge Allen Baddour noted that North Carolina is “over-reliant on institutions” for people with intellectual and developmental disabilities.
This has been a problem for a very long time.
For years, families of people with disabilities have filed lawsuits and complained that North Carolina has dragged its feet in providing support services in community settings. There is a state Medicaid program — known as the Innovations Waiver — that allows people with disabilities to receive services at home or in the community setting of their choice. However, an ever-growing waitlist has more than 16,000 people who, under current circumstances, will wait up to a decade or more for a slot to receive services.
Baddour’s ruling gives the state a 10-year timeline for serving all of the potential recipients and eliminating the massive waitlist. That would mean people who currently live in institutions — because they and their families have no other option — would have the choice to live in the community with appropriate services provided by the state.
Disability Rights North Carolina, the group representing the plaintiffs, called this a “historic” ruling that will “end segregation of thousands of people with intellectual and developmental disabilities.”
The lawsuit, Samantha R. et al v North Carolina and the NC Department of Health and Human Services, was filed in 2017 on behalf of a now 33-year-old woman, Samantha Rhoney, who is intellectually and developmentally disabled. Since 2015, Rhoney has lived in the J. Iverson Riddle Developmental Center in Morganton where her parents placed her after being denied the services they needed to keep her at home.
As the case moved to resolution this summer, Rhoney was able to move into a home in the community, outside the walls of the Riddle Center. She continues to go to Riddle most days for a day program, but she sleeps in a bed in her own home.
“I believe in my heart Samantha is in a beautiful home because God is giving her a blessing for all the trials she had to endure,” her mother Dana Rhoney said in a statement issued by Disability Rights North Carolina “I want people to know Samantha, I want people to see the beautiful side of her. And I want the state to wake up and offer support (to others). The state could actually save money if they would offer the support.”
Aside from the victory for Rhoney, advocates in the disability community are applauding the ruling, which has the potential for producing a sea change in the lives of people with disabilities in North Carolina.
But the Rhoneys’ fight is far from over. It will take a lot of planning and likely a billion dollars in funding for North Carolina to comply with the judge’s order. In the past, the state has been slow to comply with court rulings that require large investments. On top of that, the state’s Department of Health and Human Services has indicated that it may appeal the ruling, which would further delay the process.
Long history of discrimination
Last week’s ruling builds upon federal law that prohibits warehousing people with disabilities away from the rest of society.
In 1990, President George H. W. Bush signed the Americans with Disabilities Act which prohibits discrimination against people with disabilities of all kinds. But as the 1990s wore on, it was evident that people with disabilities weren’t receiving some of the rights guaranteed to them in the ADA. Then in 1999, the U.S. Supreme Court issued the Olmstead decision, which clarified the ADA. Justice Ruth Bader Ginsberg wrote in an opinion for the majority that people with disabilities were experiencing “unjustified segregation” when they were denied the opportunity to live a life fully integrated into their communities.
Because of the Olmstead decision, states have been compelled to provide services to people with disabilities in the communities where they want to live. But North Carolina has come under scrutiny for dragging its feet in providing the services to help people live where they wish.
For the plaintiff Samantha R., that’s been the case. Her family was forced to place her in a state institution when Partners Health Management, one of North Carolina’s state-funded mental health management agencies, refused her parents’ requests for services in their home, despite multiple requests and trips to court.
Before then, the Rhoneys described taking Samantha out to restaurants, water parks and concerts. As their support dollars from Partners were cut, though, they said they had no choice but to place her in an institution.
When her parents finally admitted Samantha to the J. Iverson Riddle Developmental Center in Morganton, her father added a written addendum to her admission papers.
“The reason the guardians are requesting this placement is Partners’ refusal to approve the proper level of service in her natural home. Therefore she must go from the least restrictive setting to the most restrictive setting in order to assure her health and safety,” Tim Rhoney said, according to documents provided by Disability Rights North Carolina.
Getting buy-in from lawmakers
Executing the plan laid out in the judge’s ruling will require a large and continued financial investment from lawmakers, who have not been quick to spend on such needs.
In last year’s biennial budget, state lawmakers appropriated funds for 1,000 additional Innovations Waiver slots at a cost of about $30 million. All told, the General Assembly has funded fewer than 2,000 waiver slots over the past decade, even as the waitlist ballooned from about 10,000 in 2012 to about 16,000 at present. During that time, lawmakers also commissioned two groups to study the program.
The judge’s order also addresses the people who live in institutions such as the Riddle Center and as many as 3,100 residents of 349 smaller intermediate care homes throughout the state, about 4,000 people all told.
NC Health News made several requests for comment to legislative leaders on the decision but did not get a response.
Baddour’s ruling came the same day that the state Supreme Court issued a 4-3 ruling in the long-running Leandro case, ordering lawmakers to adhere to a spending plan to ensure that all children in North Carolina have access to a “sound basic education.”
Justice Robin Hudson wrote the majority opinion for the four Democrats on the state’s highest court disputing lawmakers’ contention that forcing such a spending plan violates the separation of powers and the General Assembly’s control of state purse strings.
In a dissent for the three Republican members of the court, Justice Phil Berger Jr. called the majority opinion “tyranny.”
This decision from Baddour may well receive the same kind of legislative pushback as Leandro. State Medicaid head Dave Richard said the legislators he talked to were not pleased. Part of that displeasure stemmed from the fact that lawmakers have started making investments aside from the additional waiver slots last year. And legislators had committed to add more slots for the Innovations Waiver in the coming years than they had before.
“I won’t speak for them, but I don’t think any of them were really thrilled with the idea of the order itself,” Richard said.
As for his department, Richard said officials are considering their options.
“We as a department, we tend to want to abide by judges’ orders, that’s our makeup,” Richard said. “We want to follow the law and follow what the Court tells us to do.”
Richard emphasized the constraints created by Baddour’s ruling and the reality that the system will need time to adjust. He said it’s been a challenge to find workers to serve the 1,000 extra slots added just in the past year, given the low wages on offer. That’s even after the General Assembly raised wages for workers serving people in the Innovations program by $2.10 per hour across the board. It was the largest one-time salary increase the legislature ever granted the program.
“And we still have significant difficulty getting people to work in those services because of what we’re seeing,” Richard said. “That probably got people at $13 or $14 an hour. And the reality is we need to get people to $18 to $19 an hour if we’re going to compete.”
Even though Baddour gave the state a decade to fulfill his order, Richard called it “pretty doggone aggressive.”
“We all have to do a better job of moving forward quicker,” Richard said. “But we think this is probably not the best way to do it.”
Richard’s fear is that if the state moves too fast, there could be a repeat of earlier efforts to deinstitutionalize people, only to have them end up on the street or in homeless shelters.
Lessons from the past
North Carolina has been sued before over similar issues around housing people with disabilities in institutions rather than facilitating life in the larger community.
In 2012, the U.S. Department of Justice forced the state into a settlement, where the state agreed to move some 3,000 people with mental health and developmental disabilities who were living in the state’s adult care homes into homes in the community over eight years at a price tag of $287 million. The state had trouble meeting the settlement timeline at first and received a two-year extension.
Marti Knisley is the independent reviewer of that settlement agreement and has documented the state’s compliance progress over the years. She offered some insight into what it would take for the state to meet the latest court order. First, she said, it will take a huge cultural shift in the way people think about disability services.
“For so long in this state, institutional services — at least on the mental health side — had been more available than community services,” Knisley said. “And so I think it’s going to be important to work with families and guardians and staff in the community about the possibilities that previously people haven’t really embraced it in a way that says, ‘Yes, we can.’
“I truly believe it’s possible, but I think that it’s going to require a really well thought through, long-range plan about what resources are going to have to be available,” Knisley said.
Those details include finding housing, recruiting and training staff, and then paying staff enough to continue these jobs, etc. If all of the details aren’t worked out before people are moved, it won’t work and some may end up back in the institutions they started in.
“This was a huge challenge in the transition to community living initiative and the state had to learn how to do this and it took some time,” Knisley said. “And I think they’re making progress now on it.”
There are people in the state who have worked on the Transitions to Community Living program that can be helpful about anticipating those issues, Knisley added.
“I think that’s going to be really, really important,” she said.
After seven years, the state finally transitioned 3,000 people with disabilities into supportive housing through the transition to community living program, Knisley said. But when the state started, there wasn’t a clear plan for how to make that happen. Today, North Carolina has put together “what is now, arguably, one of the best housing support systems in the country,” Knisley said
Even with that progress, she said there is still much work to be done on the other aspects outside of housing, such as mental health treatment and employment services for people with disabilities.
“Making housing available is one thing and helping people sustain full lives in the community is yet another challenge,” Knisley said.
Addressing the workforce shortage
One of the points Baddour made in his ruling is that North Carolina has a shortage of direct care workers to provide services to people with disabilities. The judge ordered that the state should “address the insufficient provider network by professionalizing the [direct service provider] workforce through credentialing and appropriate compensation.”
Bryan Dooley, 32, is feeling the weight of this workforce shortage right now after looking for months to hire a new direct service provider to no avail. For the past six and a half years, Dooley has been living independently in his Winston-Salem home with the assistance of a direct service provider, David Owen. Owen cooks for Dooley, performs his hygiene, drives him where he needs to go and even translates for him.
Owen enjoys working with Dooley, saying “he’s my boss, but he’s also my buddy, my best friend.”
But Owen’s job has become more taxing in recent years — working 12- to 14-hour days — after Dooley’s mother and primary caregiver passed away. Dooley spends the weekends at his grandparents’ house, but they are in their late 80s and cannot support him full time.
They temporarily found some relief by hiring a nursing school student to fill a few hours a day, but she found a higher paying full-time job in her field. Dooley said that’s happened with at least two other direct support professionals.
Two months ago, Owen accepted a new job with increased pay, better hours and benefits as an Olmstead case manager. Dooley says he played a part in putting Owen, who has a background in music, on this career path.
“It’s actually fun for me to watch him grow into a different position,” Dooley said.
This is Owen’s last week working with Dooley, and he’s desperate to find another direct service provider.
“I need to find a new one, and it shouldn’t be this hard,” Dooley said.
Ironically, Dooley has a full-time job at Solutions for Independence, helping people like himself live independently where they choose.
To support people like Dooley, the state will need to attract workers to this field and retain them with living wages and opportunities for upward mobility, said Michelle Franklin, a researcher at Duke and a nurse practitioner at UNC’s Carolina Institute for Developmental Disabilities.
“I do think the state has been trying to do this, but that that goal hasn’t been fully realized because financially it’s not possible to fund two parallel systems: to be providing really excellent care in institutional settings as well as in the community with the current finances that we have,” she said.
“Obviously there will be a need for respite or short-term stabilization in institutional settings,” Franklin explained. “But really, the system needs to be in the community where people have resources, the support to stay safe and thrive. And we have to be committed to that system.”
She hopes this court decision will help solidify the drive to invest in the community system.
Potential economic gains
Lisa Grafstein from Disability Rights argued that fulfilling the direct service provider mandate of the judge’s order could be a potent driver for employment.
“This is about creating jobs around the state that support people in their community, this is 18,000 plus jobs,” Grafstein said. “It’s not just concentrated areas where there are facilities, but across rural communities, communities of color, really, something that we would pay money to bring a manufacturer, for example, to the state to bring these kinds of jobs.”
John Nash, head of The Arc of North Carolina, compared the employment potential generated by the ruling to the type of employment brought to the state by computer giant Apple. That company received close to a billion dollars in incentives to bring 3,000 jobs primarily to the Triangle. By contrast, Nash said, for a similar expenditure, the state could generate employment for tens of thousands of workers in all 100 counties.
That money would be spent to hire, train and support the workers needed to help people like Rhoney and Dooley live in their communities. But the benefits to those communities will be even greater. Nash, who worked in economic development before working at The Arc, calculated that it would cost about a billion dollars to get everyone on the Innovations waitlist the support services they need in their communities.
The spending would be on salaries for direct care workers, aides, licensed practical nurses, registered nurses, teachers aides in special education classrooms. He said that those are the types of dollars that don’t then flow out of state but stay in communities where those workers live.
“One dollar doesn’t just go out once you spend it, it doesn’t stop, it cycles through the economy,” he said. And he estimated that each dollar spent would generate $1.68 in economic activity.
“If you’re making $15 an hour, which is generally the high end of [the pay scale for direct care workers], you’re not going very far to spend it, it’s staying pretty close,” Nash said. “They’re not putting much of that $15 an hour away into savings. Probably 85 percent of that money is being spent within a 50-mile radius.”
And because many of the people served are on Medicaid, where the federal government pays two dollars for every one spent by North Carolina, Nash noted that much of that billion-dollar price tag will be borne by the federal government.
That kind of job spending also provides a pipeline for those workers to improve their lives. But it will take three to five years, perhaps longer, to get that employment pipeline started and stabilized he said.
“It’s not just a billion dollars in cost,” Nash said. “We’re also generating dollars on the other side
Despite the high cost, Nash said he believes creating the workforce is doable, even in a challenging political atmosphere.
“All this needs is for someone visionary to step up. Administration, legislature, probably both, people out in the community sit down and say, ‘Okay, let’s solve this problem. Other things can go to hell in a handbasket, but let’s solve this problem,’” Nash said.