By Anne Blythe

Disability Rights North Carolina wasted no time in developing a new plan after suffering a setback last week in the organization’s six-year court battle to push the state to provide more home and community services for people with intellectual and developmental disabilities.

Superior Court Judge Allen Baddour agreed to temporarily halt the implementation of his ruling in the long-running Samantha R case, which the advocacy organization had praised as “historic.”

The state Department of Health and Human Services asked for a delay in the sweeping Nov. 2, 2022, order that would force the state to provide a wider array of services within the next decade for people with intellectual and developmental disabilities.

DHHS has sought a higher court’s review and opinion of the legality of benchmarks and specifics outlined in Baddour’s decision. That process could take months.

“The intellectual and developmental disability community cannot wait for a final ruling,” Disability Rights North Carolina said in a news alert to its supporters and advocates. “We must continue to move forward.”

To do so while the lawsuit continues to wend slowly through the court system, Disability Rights urged advocates to contact North Carolina lawmakers and lobby for:

  • Higher pay for direct services providers who are in short supply in an economy experiencing many worker shortages
  • More state funds for the some 16,000 residents who meet the qualifications for support services through a state Medicaid program but are on a growing waiting list

The wait continues

Baddour’s 12-page ruling from November gave hope to people who would choose to move loved ones with disabilities from institutional settings to care for them in their homes or communities.

Disability Rights estimates that at least 2,000 more slots are needed in the coming fiscal year for people who qualify for the Innovations Waiver, the state Medicaid program that allows people with disabilities to receive care in community settings or their homes. 

The organization’s goal with the litigation is to decrease the number of people in institutional settings — individuals who, with more care, could have more opportunities and live self-directed lives in their communities.

In the case of Samantha R. et al vs. NCDHHS and the State of North Carolina, there is overall agreement that more needs to be done for the disability community. The lawsuit was filed in 2017 after the parents of Samantha Rhoney, known in court documents as Samantha R., were rejected for services they needed to be able to keep their daughter at home.

In 2015, Rhoney’s parents felt compelled to place their daughter in the J. Iverson Riddle Developmental Center in Morganton, a stint that evolved into a multi-year stay. Though several months ago they were able to get more favorable community-based services, the Rhoneys’ situation has highlighted the difficulties that many face.

“NCDHHS is committed to empowering all individuals with intellectual and developmental disabilities with the resources they need to live healthy, independent lives in communities of their choosing,” according to a statement issued by the department Friday. “That commitment is why we are appealing part of the court order in Samantha R. et al. vs. NCDHHS and the State of North Carolina, which would have put individuals at risk for harm.”

That statement, claiming that some individuals with disabilities would experience harm from the Baddour ruling, arose frequently during a virtual hearing Feb. 2 on the state’s request for a stay.

The state contends that the timeline outlined in Baddour’s far-reaching Nov. 2 order would have meant that some people receiving care in institutions would be forced out of facilities against their will.

A provision of the order would have ended long-term admissions into so-called intermediate care facilities in six years, according to Kody Kinsley, DHHS secretary. Additionally, Kinsley said in December, following the order could push at least 1,000 individuals out of small, privately run, community-based homes and other stable environments on which their families rely.

Challenging either/or

Baddour challenged some of those assertions in the Feb. 2 hour-long hearing.

Robert Wood, the attorney from the state attorney general’s office representing DHHS, argued that Baddour’s order would require a shift of funding allocated for people with traumatic brain injuries to those with intellectual and developmental disabilities.

“The idea that this is being set up as either/or between people … is a false choice,” Baddour said, noting that neither Disability Rights nor he had pitted one group of people with disabilities over another. That, he suggested, was the state’s decision.

On behalf of DHHS, Wood argued that meeting the judge’s timeline would force intricate, long-term planning by the state and a shifting of funds that might not be necessary for the department if the state Court of Appeals rules in favor of his client.

The state has done some of those tasks already.

“I agree you’re not ordering the shutdown or the stopping of any particular program,” Wood responded. “My point in response to that is the money needs to come from somewhere, and so something needs to change in the state’s planning.”

The state has done some long-term planning in the wake of the landmark 1999 U.S. Supreme Court Olmstead decision, which found that uncalled for segregation of people with disabilities was unlawful discrimination.

Last year in January, DHHS released its Olmstead plan for 2022 and 2023, which calls for placing at least 3,000 qualified people with disabilities into independent housing. Fulfilling the long-term vision of the Olmstead Plan, according to DHHS, will take annual investments of $150 million.

The General Assembly funded 1,000 additional spots for the Innovations Waiver last year at a cost of $29.8 million in recurring funding. The legislature also allotted $300,000 to increase the pay for more direct service professionals, Wood pointed out.

Screen shot of the section of the state budget document for Fiscal Years 2021-23 denoting the amount appropriated for 1,000 additional Innovations Waiver slots, which adds up to $29.8 million in recurring funds.
Screen shot of the section of the state budget document for Fiscal Years 2021-23 denoting the amount appropriated for 1,000 additional Innovations Waiver slots.

“That’s progress, right?” Wood suggested to Baddour at the hearing this month. “It’s not status quo like plaintiffs like to say. Is it enough? Absolutely not. But is it nothing? No. It’s quite an impressive start of getting the process in place.”

“These are big systemic, expensive, system-wide issues,” Wood added, emphasizing that the department would rather not change its strategic direction and put in a lot of planning for naught if the appeals court were to rule in the state’s favor. 

Baddour highlighted the confusing message.

“On the one hand you say, ‘We want all this to happen,’ but then you say ‘If the Court of Appeals says we don’t have to, then we would stop,'” Baddour said. “So do you want it to happen or not?”

Big ask or historic

Lisa Grafstein, the attorney representing Disability Rights at the hearing, questioned whether the state wanted to develop specifics and benchmarks for a plan that advocates have sought for years.

The state, Grafstein pointed out, has called Baddour’s ruling “a big ask.”

“I think it’s a different way of saying it’s historic,” added Grafstein, who recently was elected to the state Senate to represent Wake County. “We believe that equality is not a big ask, that equality is what this case is really about.”

“It’s the first time a court has required defendants to produce results and not just continue to make promises that they’ve been making for decades now,” Grafstein added.

“They would prefer that we ask politely and wait patiently,” Grafstein added. “One of the rights at stake here for people with [intellectual and developmental disabilities] is the right to be treated with dignity. 

“We’re not pleading or begging on their behalf. We’re saying what is happening is wrong and it needs to stop.”

Correction: A previous version of this article inaccurately listed Judge Allen Baddour’s judicial district. His judicial district is in Orange and Chatham counties.

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Anne Blythe, a reporter in North Carolina for more than three decades, writes about oral health care, children's health and other topics for North Carolina Health News.

2 replies on “Disability rights advocates scramble to work around delay in expansion of state services”

  1. It’s odd and potentially tragic that NCDR misrepresents a significant aspect of their “push for equal rights “ for “all people with Intellectual and Developmental Disabilities (ID/D).” YES all agree on more formalized training and better compensation for Direct Care Professionals (DCP). YES all agree that Innovations Waivers need to be made available to more patients much more quickly than now and if people like Samantha R. want to live at home and can do it they deserve support. BUT there’s another aspect of NCDR’s push they like to minimize and articles like this minimize and that is the need to PRESERVE ICF care for those who need it. Whose lives depend on it and whose families have chosen it – after years of caring for their children at home – because it is the best, safest and most comprehensive care for their children. Innovations waivers DOES NOT cover housing costs, nursing costs, physical therapy costs, speech and occupational therapy costs so that people like my daughter who is blind, non verbal, mobility impaired with Cerebral Palsy and right sided rigidity- among several other problems- would be unprotected if they had no one in their family to live with.

    The “Community“ is a term NCDR narrowly defines as living in a residential environment presumably with family receiving adequate DCP and Innovations Waivers support.

    As a multi year sole caregiver of my daughter and a Family Physician of 45 years experience I have seen this issue from multiple sides and lived it myself. It seems so sad and tragic that NCDR can’t discuss the necessity of preserving ICF care while striving to achieve their first two admirable goals… I’ve worked with caregivers of ID/D patients who could certainly use more support. This issue would likely be more efficiently solved by more dialogue with the thousands of parents and guardians who have children and family members in ICF or Adult Home Care and NCDR. Closer examination of their goals “for equal treatment for all “ would focus them better on helping all instead of helping some and harming others. Samantha R.’s needs are her own. They’re not the needs of my daughter or many others.

    Frank R. Moyer, M.D.

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