'The fight is always tiring': Lawmakers, watchdog tussle over how to serve disabled people
Disagreements over the best way to help people with disabilities in North Carolina has divided that community and spilled into the state legislature as lawmakers seek oversight over a key watchdog.
Lawsuits from that watchdog, Disability Rights NC, could ultimately force the state to spend hundreds of millions of dollars to help people with disabilities live at home. That push threatens to close existing group homes, according to proprietors, as well as workshops that employ people with disabilities and doing simple jobs for well below minimum wage.
These are arrangements that some parents of people with disabilities are happy with. They fear losing these services, throwing their lives into turmoil and endangering their adult children.
“That is his life,” said Nancy Baker whose son, Jerry, lives in a Rutherford County group home and works in a local workshop packaging pink and blue baby bands for newborns.
“That’s his friends,” Baker said. “That’s where he makes a little bit of money.
“Money doesn’t mean a thing to Jerry. But you take that vocational workshop away from Jerry and you will shorten his life. That absolutely scares me to death.”
For people able to live more independently, but who need help to do so, group homes and workshops sound like a nightmare. They’re working with Disability Rights NC — the state’s federally designated nonprofit that is mandated to advocate for people with disabilities — to force the state to fund a long-standing backlog for what are known as “innovations waivers,” state money families use to hire in-home help.
“I’m 34 years old. I don’t want to live in a nursing home,” said Jonathan D’Angelo, who has spinal muscular atrophy and needs help dressing and using the bathroom, but is able to live at home with help.
“Everything I’ve worked to achieve … would be gone,” said D’Angelo, who earned masters degree from East Carolina University and works full-time in human resources “And once you go in there, it’s very hard to get out.”
‘Nobody’s moving fast enough’
The push and pull over how to serve these communities is nothing new. But the past year brought two massive decisions, both now on hold.
Workshops like the one Jerry goes to were once set for closure by the summer of 2026 under a deal Disability Rights NC struck last year with the state. The plan was to move people into better paying jobs in the community, with a job coach tagging along as necessary.
Also last year, a judge’s decision in a separate lawsuit called for group homes, where people with disabilities often live together with supervision, to close their doors to new admissions in 2028 — a step owners say threatens their business model even before it’s implemented.
The state’s Department of Health and Human Services agreed. If providers can’t take new admissions, then beds stay empty when people transfer, or die. With less money coming in, providers have to decide “at what point do I have to reduce my staff size?” said Debra Farrington, a DHHS deputy secretary
“If you’re a small six-bed group home, if you can no longer admit people … what’s the number you get to before you can no longer afford to be open?” Farrington said.
For Disability Rights NC and many of the people it advocates for, it’s past time to act. The Olmstead decision, a landmark Supreme Court case that generally says people with disabilities have a right to live in their communities instead of institutions, is almost 24 years old. There are 17,000 people in North Carolina on a waiting list for innovations waivers and the in-home services they provide.
The state funds about 14,350 waivers now, at a cost of about $80,000 each a year. The average wait time to get one is about five years, DHHS said.
The North Carolina House of Representatives, in a budget it advanced last month, proposed enough new funding to cover another 250 waivers. Gov. Roy Cooper had asked for 1,000.
DRNC wants the wait list wiped out over the next decade. It also wants state-funded raises for in-home care workers significant enough to overcome a major workforce shortage.
A judge agreed with DRNC last fall, telling the state to boost funding and execute a court-ordered plan, but DHHS appealed the ruling, delaying implementation.
“Nobody’s moving fast enough,” said Corye Dunn, DRNC’s director of public policy. “People keep telling people with disabilities to wait. … We are just dragging our feet in this state.”
The progress that DRNC thought it won last year set off alarm bells for some families, and for the companies that run group homes and congregate workshops. Some parents fear widespread closures will leave them with severely disabled adult children that they can’t always care for.
Hal Shigley said his daughter, who has cerebral palsy, needs constant attention. He said she gets it in Raleigh at TLC, formerly called the Tammy Lynn Center.
“There are a lot of mildly [disabled] people who can do just fine in the community,” Shigley said. “And so that’s a noble cause, I think. But my daughter, for example, is profoundly disabled. We love where she is.
“It seems like Disability Rights is paying more attention to people who, I would say, are mildly disabled,” Shigley said. “It is tricky to advocate for the whole range of folks.”
Dunn said the group isn't trying to close facilities, but provide options. She noted that not every group home offers the same quality of care.
"We recognize that there are facilities that go above the minimum legal requirements, and we want to make sure that everybody has the opportunity to get high quality care, whether they choose to do that in a congregate setting or at home," she said.
Negotiating via legislation
Lawmakers frustrated with Disability Rights NC moved a bill through the state House last month designed to bring the watchdog to the negotiation table.
House Bill 361 mandates a series of reports that essentially ask DRNC to justify itself. Among other things, the group would have to lay out 10 years worth of goals and successes, including the number of students it advocated for in that time, disaggregated by the students’ disabilities.
For DRNC, which gets its funding from the federal government and private donors and not the state, the bill was a shot across the bow. State government should not require a nonprofit that it doesn’t fund to answer to the legislature, Dunn said.
“If we were just being asked to send a report, there wouldn’t be a problem,” Dunn said. “This is an exertion of power and control, not an effort to get better information.”
Bill sponsors acknowledge they don’t just want reports. Rep. Donna White, the bill’s lead sponsor, said DRNC is too quick to file suit and force people to spend money defending themselves “against something that doesn’t seem to be a real problem.”
“Just don’t slam a lawsuit on before you’ve even talked with them and figured out what the real issue is,” said White, R-Johnston.
The bill has bipartisan support and passed the House 102-12. It’s awaiting action in the state Senate.
Rep. Sarah Crawford is a co-sponsor. She’s also TLC’s chief executive and said DRNC has “moved the ball forward” several times in recent years "without really communicating with the stakeholders.”
Crawford, D-Wake, says the state risks breaking its current model for serving people with disabilities before a new one is ready, and that the bill is about forcing more conversations.
“The bottom line is we need more funding for disability services,” said Crawford, D-Wake. “And DRNC is absolutely right on that. … We do need to give people more choice. We cannot do it at the expense of eliminating choices that people have already made that are working for them.”
Cooper’s Department of Health and Human Services agrees and says it has a plan to boost community services, just not as fast as Disability Rights wants.
“We think we’ve made some progress over the last few years,” DHHS Deputy Secretary Debra Farrington said. “We want to be able to build the community options before we shut the front door on some of these facilities.”
Disability Rights and many of its supporters say it’s time to change now, and they dismiss concerns about group home and workshop closures as industry-fueled fear mongering. In a fact-sheet on the group’s Samantha R. v. North Carolina lawsuit, which deals with group homes and innovations waiver funding, DRNC says this process has played out in other states and that, with proper planning, homes known as intermediate care facilities “can transition to community-based services and continue to operate profitably.”
“The old model is the old model, and we need to make changes,” Dunn said. “But that doesn’t mean that those businesses have to cease operating. They do have to change … and we are way past time.”
‘The fight is always tiring’
Bill Donohue’s son has Down Syndrome and a form of muscular dystrophy. With an innovations waiver, he’s able to live at home.
He’d like to get married, Bill Donohue said, but his fiance lives in a group home.
“Their engagement is permanently on hold,” Donohue said. “The legislators won’t fund the waivers. They won’t fund the slots. They talk a good game. And frankly, the governor … is playing the game that everybody’s playing.”
Keith McDonald’s daughter lives at TLC. She’s 18 and can’t feed herself or go to the bathroom on her own.
“TLC for us was a life line,” McDonald said. “My wife and I were exhausted. We were just going under, and we have two other children.”
McDonald worries that Disability Rights’ well intentioned crusading will close down TLC and homes like it. Disability Rights says it is working to give people more choices; McDonald fears his family’s choices will shrink.
“I appreciate what they’re trying to do,” he said. “They’re looking out for disability rights. … I think they just kind of missed the ball on this particular issue.”
Donohue, a former DRNC board member, said he understands the fear. Some parents can’t or don’t want to deal with a severely disabled adult child “and that’s really a hard conversation to have.”
“I know the [DRNC] staff. I know the work that’s being done,” Donohue said. “And the last thing they’d do is force someone into a community. … They are not going to be closing institutions that are effective.”
Dunn acknowledged that some people prefer congregate settings. But that doesn’t mean they would have chosen that if there were other options, and “in our current system there is precious little choice available.”
D’Angelo said home care should be the default option, with higher levels of care for people who need it. He acknowledged the friction between people with disabilities who can live at home and those whose families don’t know what they’ll do if group homes close. He said he doesn’t believe the systemic changes that DRNC is pushing for will cause mass closures.
D’Angelo said it’s always a fight to get what you need with disability services,to avoid being warehoused. You fight with insurance companies. You fight with the government. His education in Connecticut began with a lawsuit.
“That fight is always tiring,” he said. “So there’s fear about change, but the system has to change.”
“You have to have a strong watchdog,” he said. “That pushes for big systemic change which, because of the way the system is structured, is really hard.”
