A bipartisan N.C. Senate bill would provide $37.5 million in state funding toward a modest attempt at reducing the long list of North Carolinians with intellectual and developmental disabilities awaiting additional personal-care services.
Senate Bill 350 was filed Thursday with Sen. Joyce Krawiec, R-Forsyth, as primary sponsor.
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. A slot is created for each individual receiving the additional services.
There are more than 15,000 individuals on the waiting list known as North Carolina’s Registry of Unmet Needs, including at least 809 in Forsyth County.
Some North Carolinians have waited as many as 19 years.
One example is Matt Potter, who has been waiting for 10 years for a waiver slot. He has cerebral palsy and relies on his mother, Sarah, to help care for him.
Potter, 34, has a bachelor’s degree from Wake Forest and makes a living doing independent contract work.
“I have no recourse if I don’t have a family member that is able to take care of me,” Potter said in March 2020 during a local advocacy rally. “I would end up in an institution.”
There are 266 Forsyth residents currently receiving the services, according to behavioral health managed care organization Cardinal Innovations.
However, Forsyth has not gained a slot since at least 2017.
If approved as a standalone bill, or if inserted as likely into the Republican state 2021-22 budget proposal, the language would provide the funding needed for at least 1,000 individuals.
That would reduce the waiting list by 6.7% by Jan. 1 if the bill is signed into law.
The $37.5 million would be the state match for the 2021-22 and 2022-23 state fiscal years to secure $82.2 million in funding from the federal Centers for Disease Control and Prevention.
At 1,000 slots, SB350 would represent a 2½ times 40% increase over the 400 new slots included in the 2017-18 state budget.
The 2019-20 Republican-sponsored state budget bill would have increased the waiver slots by up to 1,000 over two years at a cost of between $32 million and $41 million.
That bill was vetoed by Democratic Gov. Roy Cooper because it did not include funding for a form of state Medicaid expansion or pay raises for public school teachers at the level he had recommended.
“Expanding innovation waiver slots has been a priority for me,” Krawiec said. “I believe it is crucial to provide services to this vulnerable population.
“I do believe that the timing is right. I will not give up until services to this group of citizens have been provided.”
The funding for adding at least 1,000 slots would be sent to the state’s seven behavioral health MCOs.
Cardinal currently has 20 counties, including Alamance, Davidson, Davie, Forsyth, Rockingham and Stokes in the Triad.
Forsyth is among five Cardinal counties asking permission from state Health Secretary Dr. Mandy Cohen to divest from Cardinal because of concerns about Cardinal’s oversight.
Once funding is distributed to the MCOs, SB350 would require the additional slots “be made available to the counties on a per-capita basis calculated as the number of slots multiplied by the population of the county divided by the population in its catchment area.”
“Within each county, the slots shall be filled on a first-come, first-served basis determined by the length of time an individual has been on the waiting list.”
SB350 also would require the N.C. Department of Health and Human Services to work with stakeholders on a 10-year plan to assess and development new strategies for further reduction of the waiting list. The 10-year plan proposal also was included in the 2019-20 state budget bill.
The funding shortfall began in earnest during the Easley and Perdue administrations when the Democratic-controlled legislature reduced overall state spending in order to balance the state budget during the Great Recession.
However, individuals on the registry list for at least 10 years have been on it throughout Republican control of the legislature that began in 2011.
During the 2019-20 state budget debate, Senate GOP leaders focused on reducing the waiting 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.
Krawiec in 2019 also cited her preference for prioritizing those on the wait list before funding Medicaid expansion for able-bodied adults.
“It is a good start to respond to the backlog,” Rep. Donny Lambeth, R-Forsyth, said Friday. “The Senate leads the budget process this time, and we will see how committed the Senate is to funding this in its budget plans.
“It will take a few years, and a commitment to add new funds, to really have an impact on reducing the backlog, but give credit to the Senate for taking this initial step.”
Rep. Verla Insko, D-Orange, said Friday that SB350 “would send a strong signal to parents that we are serious about making improvements every cycle, if not every year.”
“In the long run, it would save the state from paying for some of the institutional care.”
In March 2020, a coalition of behavioral-health advocates held what was known as the “2Long2Wait” rally to draw attention to the registry and waiting list.
Bill Donohue, one of the rally organizers, wrote in an 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, 36, 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.
On Friday, Donohue called SB350 “a small start — the governor and General Assembly have thrown these small numbers out before as negotiating pieces.”
“They need a plan to address the big elephant before it becomes the big zoo,” he said.
Donohue said the 10-year plan “has been in order for a long time.”
“The legislature has a long history of plans that gather dust and or/go unfunded,” he said. “But, it’s an essential start to have something that goes beyond two-year funding cycles.”
Donohue said he is encouraged that bill sponsors recognize “the notion of addressing those in N.C. who have waited the longest, irrespective of county capitation, is important.”
“This bill seems to begin thinking some about that, but the ifs and what’s and maybe’s within the Medicaid bureaucracy is a lot to digest,” he said. “Creating a living minimum wage would be a huge start that would contribute to careers for caregivers.”
The long-term solution “requires taxation, which requires courage,” Donohue said.
Local behavioral-health advocate Laurie Coker said chipping away at the waiting list is only a temporary solution since individuals continue to be added to the N.C. registry, either as they are recognized in need of services or they and family members moved into the state.
“If DHHS can move quickly, and the study does not take too long, parent caregivers, some in their 70’s or older, can hope for a light at the end of a very long and ever scarier tunnel,” Coker said.