When it comes to serving people with intellectual and developmental disabilities such as autism and Down syndrome, there are the haves and have nots. The state of North Carolina pays for care, but not for everyone.
There are a limited number of spots. Those lucky enough to have what’s called a waiver are entitled to a variety of in-home help. But there are more than 12,000 people who aren’t so lucky. They are on a waiting list that’s years long, and the only way to jump the list is if you’re in a crisis.
Landon Freeman is in the land of the have nots. He is on the wait list. The 24-year-old has autism, bipolar disorder and obsessive-compulsive disorder. He's been in the Novant Health emergency room for 79 days.. Freeman was admitted January 9 after he attempted to run away from home. This is the fifth time he’s been to the hospital since around Thanksgiving. His mother, Yvonne Freeman, says his depression set in after a manic episode.
“And then we started with the emotional issues,” said Freeman. “The crying, the really being sad. ‘My brain, my brain, my brain, is not working right. I don’t know what’s wrong with my brain.’ And then he would get so frustrated it would build and he would tantrum.”
And his parents, who are 55 and 61 and recovering from shoulder and knee surgeries, are finding it harder to physically restrain him.
“Developmentally he functions as an 8-year-old but he’s 180 pounds so we can’t restrain him,” Freeman said. “We also can’t keep him under lock and key so he can’t run away. And that’s the real danger.”
And that’s why Landon’s parents are refusing to take him home from the hospital. State Medicaid pays for his physical care. So for 79 days, he’s spent most of his time sitting in a hospital bed.
Doctors check on him and he gets his medicine. But his mother says he spends most of his time watching TV, doing puzzles and visiting with family and friends. Doctors and Cardinal Innovations Healthcare, the state insurance organization that controls his behavioral care, say he’s ready to go home. Mom says no. He wasn’t able to remain stable the last four times he came home from the hospital, and she doesn’t believe this time will be any different.
“And it would last about 24 hours where he would be almost himself but not quite and then it would start spiraling downward again,” she said. “So he was trying really hard to come out of the depression he just couldn’t pull himself out of it.”
So now Yvonne and husband David are in a standoff. They are appealing for Landon to get one of the 19 spots Cardinal has reserved for people in emergencies. But Cardinal decides whether someone is in enough of a crisis to get one of those spots. It makes that call based on documentation from medical professionals that show a patient is at an imminent risk of harm. And requires evidence that would show his family could no longer take care of him, he’s in danger of getting taken into state custody or is being abused or neglected.
The Freemans agreed to let Cardinal discuss why Landon is being denied an emergency spot. Cardinal CEO Trey Sutten said Cardinal doctors agreed with other doctors who have evaluated Landon.
“Several of our doctors have now reviewed this case and are in agreement that Landon can be successful in a less restrictive environment and with the right supports and services in that setting,” said Sutten.
Sutten said that less restrictive setting is his parents home. The Freemans disagree. They say the services like being taught skills for living at home, vocational programs, or someone watching him while his parents go to work or run errands won’t help because he’s tried them before.
“Up to this point we felt like we just have to wait in line until our turn comes up with the waiver or residential placement,” she said. “But it became so bad with Landon that we needed their intervention, we needed resources now.”
Cardinal said the denial is not about the money. In fact, Sutten, the CEO, said the in-home services the company is offering are not less expensive than a coveted waiver slot. And in Cardinal’s opinion, the Freemans need to try the services together.
But if Landon was lucky enough to get a slot, he’d have it for life.
“We’re told it would open up every door for us and all of the resources would be available to Landon,” said Freeman.
Like money for him to live in a group home, or daily visits by professionals to help Landon live at home. The Freemans have been appealing within the Cardinal ranks to get Landon a slot. So far they’ve gotten denied. Which Cardinal said is not uncommon.
This upcoming wavier year, which starts in April, there are 19 emergency slots for Cardinal patients in 20 counties. More than half of the slots have already been given out says Andrea Misenheimer with Cardinal. She can’t remember a year where Cardinal didn’t fill all the slots.
“This is very, very narrow high-level criteria that has to be professionally documented,” Misenheimer said. “So we don’t have large numbers of people meet this criteria.”
One thing everyone agrees on is that there is a need for more slots. The general assembly allocates the total number of waiver slots each year. A bill introduced by Republican lawmakers would increase the more than 13,000 statewide slots by 2,000 over the next two years. That would only put a small dent in the waiting list, says Doug Sea, an attorney for the Charlotte Center for Legal Advocacy.
“The real problem is that there just aren’t enough of these slots,” Sea said. “And they only come out like once a year and everybody rushes to apply for one and if you don’t happen to be having an emergency at the moment they have some emergency slots available you are out of luck.”
And even if you are in an emergency there’s no guarantee. And often people in crisis end up at hospitals. Novant Health says in the Charlotte market each day there are about 10 to 15 patients that could be discharged but end up staying for a variety of reasons. The reason Landon is still there is because his parents are desperate for help.
“Every day is centered around trying to figure a way out for Landon to get placement and services,” Freeman said. "Most of our conversations revolve around that. Landon calls home six, eight, ten times a day talking to either one of us.”
Freeman says three group homes have denied Landon a spot either because he’s too aggressive, not a good fit. Even if a group home could take him, without a slot Freeman said it would be expensive and they’d probably have to sell their home to afford a stay. Even then, she worries it would be not sustainable. So, for now, the standoff continues.
“It’s who can wait the longest,” said Freeman. “Cardinal and Novant, you know they are big companies, we are just Landon’s parents.”