Charlotte resident Troy Adams has been waiting more than seven years for a special state slot that would pay for more services for developmentally disabled adults.
Adams, 29, spends three days a week at A Small Miracle in Charlotte, an adult day program where he sings karaoke, goes to the movies, visits the park and participates in other activities.
But Adams can only afford to attend 15 hours, and his parents say the cost eats up about two-thirds of his Social Security supplement income.
He could get all five days a week and access to more services covered by Medicaid with the help of the North Carolina Innovations Waiver, which provides Medicaid funding for community-based services for people like Adams.
But thousands of others are waiting for approval, and average wait times range from five to 10 years, according to the N.C. Department of Health and Human Services.
That wait has become more frustrating for Adams’ family as news reports have detailed how the agency that would grant him a slot, Cardinal Innovations Healthcare, spent money on expensive parties and retreats and lofty severance packages.
That spending is “a slap in the face,” said his mom, Heather Adams.
A long wait
Troy Adams was born premature at 23.5 weeks, weighing one pound and two ounces, dipping below a pound after he was born.
His retinas detached, causing him to go blind. He also has developmental disabilities, performing on tests at about the level of an 8 or 9 year old, his dad said.
“He’s our miracle baby,” Heather Adams said.
Now, Troy Adams is one of 11,742 N.C. residents on the Innovations Registry of Unmet Needs waiting list. Those individuals meet the criteria for a slot. Cardinal says it has 3,272 individuals on its wait list for the 20 counties it serves.
Currently, 12,738 individuals have slots and are getting services, according to DHHS.
Slots become available if more are approved by the General Assembly or if someone leaves the program. That happens if there is a change in the level of care for an individual, they move out of the state or they die.
This year, 400 slots statewide were approved by the General Assembly. Of those, Cardinal says it will get 116 slots.
The average wait time for a slot through Cardinal is 4.9 years, and during that time, Cardinal says it works to connect individuals and families to other services and support.
Approving the slots is just a small portion of what Cardinal does. The agency also coordinates care for Medicaid patients that need disability services or mental health or substance abuse needs.
In late December, the Adams family had not heard whether they could be one of the newly approved slots.
Cardinal Innovations Healthcare and other Local Managed Entities and Managed Care Organizations act as insurers, contracting with doctors and other health providers to get services for residents like Troy.
Cardinal is the LME/MCO for the Charlotte area and approves the slots, which are designed to reduce the number of adults with developmental disabilities put in institutions.
Residents in institutions have to follow rules and schedules that are typically designed to meet the needs of staff, not meet the needs of individuals, said Vicki Smith, executive director of Disability Rights N.C.
“When anyone lives in an institution, they have less self-determination,” she said.
Every few months, Adams’ parents make phone calls to Cardinal to check on his application.
They are told that they’re getting closer and they keep waiting.
‘Hard to swallow’
Cardinal’s former leadership made headlines this year for throwing expensive parties and retreats. They also paid their CEO Richard Topping a $635,000 salary and $3.8 million in severance to Topping and three other executives when they left.
“It’s just a little hard to swallow,” said Troy’s dad, Bill Adams.
That money could not have directly paid for more slots because the General Assembly caps how many are available. That’s to ensure there is enough state money to pay for the slots.
However, state Auditor Beth Wood said Cardinal could have provided services to those on the wait lists separate from the waiver.
Wood’s May audit said that Cardinal accumulated $70 million in Medicaid savings in two budget years, money that could have been spent on anything.
“They could have taken some of the $70 million and provided services to those that are on the wait list,” Wood said. They also could have used administrative money, had they spent that money more reasonably, she said.
After Cardinal paid millions in severance in November, DHHS ousted the leadership at Cardinal and took over the agency.
DHHS also had temporary restraining orders put in place against the former board and Topping. Those ousted leaders countered with a lawsuit saying DHHS could not legally take over.
In December, a new board was put in place to oversee Cardinal and future audits on LME/MCOs are coming.
Smith of Disability Rights N.C. said that the money Cardinal spent on parties, flights and high pay, could have instead been spent on specific Medicaid services.
“The Cardinal board of directors made a choice to approve lavish spending on themselves but also paid high salaries and payouts instead of taking the savings that made up their administrative funds and spending them on providing services like peer support services or respite services or supportive employment.”
“These are all things that they could have provided with some of their savings but instead, made different choices.”