A coalition of behavioral-health advocates will hold a rally Saturday with the goal of drawing attention to the more than 750 people in Forsyth County listed on North Carolina’s Registry of Unmet Needs.

The Too Long To Wait rally is scheduled for 2 p.m. at the Forsyth County Central Library, 660 W. Fifth St. in downtown Winston-Salem.

The state’s Medicaid innovations waiver initiative allows people with intellectual disabilities to receive services, known as b(3), and assistance in their homes and communities instead of in an institution.

The services involve in-home skill building, intensive recovery support and transitional living.

Rally organizers say more than 14,000 North Carolinians are on the waiting list for additional Medicaid funding and services, including at least 755 from Forsyth County.

Some people have waited as many as 17 years, with at least 250 waiting since 2010.

“It’s too long!” proclaims the flyer for the rally.

“We need to let the N.C. General Assembly know the 14,000 citizens on this list are an underserved economic and social asset, deserving home and community services,” the handbill continues

“And they vote!”

Bill Donohue, one of the rally organizers, wrote in a recent opinion piece published in the Winston-Salem Journal that the registry represents “people of all ages and socio-economic groups who have intellectual and/or developmental disabilities.”

Donohue and Deborah Woolard are the parents of Jeremy Donohue, 35, who has a rare disease combination of FSH (facioscapulohumeral) muscular dystrophy and Down syndrome.

“Though qualified for assistance, they are put in a holding pattern for the Medicaid Innovations Waiver,” Donohue wrote in the opinion piece.

“In Forsyth County, that number in wait is 755.

“Most scenarios demanding patience find breaks in the pattern — movement, hope. Forsyth County has not had any movement in four years.

“More than half of the 755 have waited a decade or more. Stuck. This is unconscionable.”

Legislative awareness

The premise of the rally aside, state legislators from both parties are aware of the registry and the pressure to expand the innovation waiver necessary to provide additional funding.

The funding shortfall began in earnest during the Easley and Perdue administration when the Democratic-controlled legislature reduced overall state spending in order to balance the state budget during the Great Recession.

Individuals on the registry list for at least 10 years have been on it throughout Republican control of the legislature that began in 2011.

The 2019-20 Republican-sponsored state budget proposal does not include Medicaid expansion language, but it does call for increasing the number of intellectual/developmental disabilities Medicaid innovation waiver slots by up to 1,000 at a cost of between $32 million and $41 million over two years. Services include personal care and in-home assistance.

Democratic Gov. Roy Cooper vetoed the GOP budget in June, in large part because it does not include a form of Medicaid expansion and it contains a lower pay raise for public school teachers (3.9% compared with his 9.1% recommendation).

By comparison, about 400 individuals were removed from the list in 2018.

Senate GOP leaders have focused on reducing the intellectual/developmental disabilities list in an attempt to counter building momentum for expanding Medicaid.

“While Democrats have focused their efforts on expanding socialized medicine via Obamacare Medicaid expansion, Republicans believe that care for people with severe disabilities should be prioritized over taxpayer funding for able-bodied adults,” according to a July 2019 statement from the office of N.C. Senate leader Phil Berger, R-Rockingham.

State Sen. Joyce Krawiec, R-Forsyth, said that “the backlog of people with disabilities who cannot care for themselves is a serious issue, and funding these slots will continue to be a priority for us.”

Krawiec also cited her preference for prioritizing those on the wait list before funding Medicaid expansion for able-bodied adults.

“This is an area we in the General Assembly need to do better,” state Rep. Donny Lambeth, R-Forsyth, a health-care expert in the legislature, said.

“I’m glad to see families getting organized,” state Rep. Verla Insko, D-Orange, also a health-care expert, said.“This should remind legislators that failure to provide what is promised by a government-funded program makes recipients ask whether the current elected officials, those that are ultimately responsible for the success or failure of these programs, should be replaced at the ballot box.”

More funding

Behavioral-health managed care organization Cardinal Innovations, as well as the former CenterPoint Human Services, has been pushed by advocates and legislators for years to provide money from its fund balance to reduce the number of people on the wait list

In some instances, those appeals were often ignored or not approved by previous Cardinal management, led by then-Chief Executive Richard Topping.

Cardinal, under Topping, also cut funding for recipient services and advocacy initiatives, hamstringing some providers with reimbursement cuts. It operated for years with little to no financial, management and board transparency.

“Our teams recently recognized that people on the registry wait list were eligible to receive more services than they were utilizing,” Trey Sutten, who took over as chief executive of Cardinal in January 2018, said in his July 2018 newsletter posted last week on Cardinals’s website.

Sutten acknowledged in the newsletter that “many of you have family, friends or loved ones who have been or are currently on this list.”

“When we get notice that a slot has opened, our teams are poised to get services up and running for that member as soon as possible,” Sutten said.

Cardinal spokeswoman Ashley Conger said Wednesday that the behavioral-health managed-care organizations “follow a process developed by the state to manage the wait list, and allocate slots when they become available.”

Few solutions

Rally organizer Donohue said there are few available solutions, all “residing solely with the North Carolina legislature.”

“Creating a living minimum wage would be a huge start that would contribute to careers for caregivers,” he said. “Using the $800 million in managed-care reserves would be another starter, or maybe the hugely anticipated fourth-quarter interest earnings on 2019 state investments.”

The long-term solution “requires taxation, which requires courage,” Donohue said.

“It’s a huge leap, but we don’t have to start there. Forty-four other states wrestle with this wait list dilemma. Some are in litigation, some are finding creative solutions.

“Few are wrapped in denial and budget gamesmanship like North Carolina.”

rcraver@wsjournal.com

336-727-7376

@rcraverWSJ

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