Families suffer while NC makes them wait years for assistance for their disabled kids

Feb. 20--CHAPEL HILL -- Laura Branan used to call twice a year to ask if her son had moved up on the waiting list.

Every year she got the same answer: "No, he hasn't moved much." The last thing they told her was he was in the top 5% of people waiting. She didn't know what that meant.

After repeating this for a decade, she gave up on it. The answers weren't changing.

Now in 2020, it's been 16 years since she and her husband, Andrew, first applied for home and community based services like support staff and therapy for their son Joe.

He's an 18-year-old diagnosed with autism who's still waiting for services that would support him in his basic needs.

Parent therapists

Joe Branan is tall and skinny with thick, blonde hair. He's moody sometimes, and his mom isn't sure how much of that is from his autism diagnosis or just because he's a teenager at Carrboro High School -- she's leaning towards the latter.

He speaks in short phrases and words, like yes or no, and he can remember things well. "He understands more than you realize," Laura Branan said. "But he doesn't like to communicate."

In his room and across the house, there are Lego creations everywhere. On a cabinet beside his bed, there's a pirate ship and a small ambulance. He's especially fond of Star Wars, and on another cabinet there are X-Wing and TIE Fighter spaceships. Downstairs on the living-room coffee table sits a big Millennium Falcon he made with his sister, Caroline.

"He's our engineer," said his dad, Andrew Branan, an assistant Extension professor with the Agricultural and Resource Economics Department at N.C. State University.

Everything in the house, from the Lego models to the books in the downstairs shelves, must be in the correct place that Joe decides; at all times. If they aren't, he'll move them back immediately. This also carries over to the light switches in the house, which he will turn off and on at a moment's notice.

In the bathroom just outside his bedroom, a step-by-step picture guide shows him exactly how to take a shower, because he needs help knowing what to do once he gets in. "He studies it now. But we still have to remind him sometimes to get out," Laura Branan said.

Joe was diagnosed with autism when he was 2 years old. His parents took him to the doctor after his mom noticed that she couldn't get his eyes to focus on the camera when she took pictures of him.

The Branans tried everything from specific diets to private therapies. Like many families, they were open to trying almost anything. They stopped private therapy and respite services after a couple of years because the cost became too much. "You've got thousands of dollars on a credit card, we didn't want to run ourselves into debt," Laura Branan said.

After that, she became certified in Applied Behavior Analysis therapy, to act as Joe's personal therapist.

Their therapy sessions, at least 20 hours per week, included helping him with joint attention (focusing on an object with another person), imitation, working tasks at a table and learning parts of speech to help him eventually express his thoughts in words. Laura Branan kept data on Joe's communication, learning and play goals for more than two years, but eventually she burned out.

Being a mom and a therapist was stressful, she said. Laura Branan used to work as a photographer and photo editor in Washington, D.C., but now she works as a substitute teacher to fit Joe's schedule. She said she's had to sacrifice a lot in her career to raise her son.

Currently, Joe doesn't have Medicaid; Laura Branan said their income is too high to receive it since Joe lives with them still. He also doesn't receive Supplemental Security Income (SSI) yet, but they're planning to apply soon. Different groups of people qualify for SSI, but the program also serves people with disabilities who have little income and resources and aren't in an institution.

Joe has had opportunities through programs like UNC TEACCH to work part-time jobs and training, but they only last for so long and his mom worries that he won't be able to get a part-time job without Supported Employment assistance from the Innovations Waiver -- the Waiver provides assistance with "choosing, acquiring, and maintaining a job."

"He's got a long life ahead of him, so this lack of security is a scary thought," she said.

Innovations Waiver waitlist

There are thousands of people in North Carolina like Joe Branan waiting to receive care through the Innovations Waiver.

The Innovations Waiver is a Medicaid program enacted statewide in 2013 to help people with intellectual and/or developmental disabilities pay for home and community based services (HCBS) as an alternative to institutionalized care.

North Carolina had the eighth-largest number of people waiting for a HCBS waiver of any state in 2017, according to the Case for Inclusion 2020 Report. Compared to states with similar populations, Pennsylvania and Georgia both have smaller waiting lists than North Carolina, and theirs are dwindling.

North Carolina's is growing steadily. In 2016, 10,000 people were waiting for the Innovations Waiver. By 2018, that number had grown to nearly 12,500 -- about the same number as people receiving the waiver.

Richard Edwards, regional vice president of Community Based Care -- a parent company of disability service providers -- said one big issue for people waiting is that there's no set single state waiting list. Instead, each of the seven managed care organizations in the state keep its own list.

Managed care organizations, such as Cardinal Innovations and Alliance Health, administer the Innovations Waiver funding and pay for individuals' services.

Edwards said this creates scattered numbers, which makes it difficult to show legislators the state's unmet needs. It also makes it hard to tell people how long they'll have to wait, because their needs and where they live factor into the decision.

Adding on factors like people who may not actually qualify for the waiver when a spot opens, and some folks who don't know there's a waiting list they need to apply for, means the numbers are often unreliable.

"Combining these different waiting lists from across the state means there's under-representation and over-representation at the same time," he said.

He and others are working with the state to create a registry they hope will be more comprehensive and capture more information about each person.

New waiver slots

Creating new waivers for people waiting is a priority for state Sen. Joyce Krawiec, a Republican from Kernersville, and other N.C. legislators.

In the legislature's 2020 budget, which was vetoed by Gov. Roy Cooper, there were 1,000 new waiver spots allotted for the next two years and $40 million to fund them.

"Let's take care of these people who have been on the waitlist for an average of 10 years," said Krawiec, who chairs the Senate Appropriations on Health and Human Services Committee.

"I don't want to see that community get made an afterthought," she said.

State Rep. Josh Dobson, a Republican from Nebo, said the waiver spots are "expensive but worth it."

Both Krawiec and Dobson said they're uncertain about the future of the new waiver slots lasting in upcoming budget discussions.

"It's very unfortunate that those slots and the people who are supposed to be helped have gotten caught up in this political gridlock," Dobson said. "I hate that."

Meanwhile, an N.C. Superior Court judge ruled Jan. 9 that the state has been illegally segregating people with intellectual and developmental disabilities in institutions or putting them at risk of institutionalization. The ruling said North Carolina violated the 1985 N.C. Persons with Disabilities Protection Act, which aims to "ensure equality of opportunity, to promote independent living, self-determination, and economic self-sufficiency."

The court will decide later how the state and DHHS will have to remedy the situation.

"Many of us know that nothing is going to change unless the state legislature changes," Laura Branan said.

ANCOR Foundation CEO Barbara Merrill -- who published the Case for Inclusion Report -- said in a press release that the country's underinvestment in long-term supports, like the Innovations Waiver, "has been one of our generation's most significant public policy failures."

Brian Grant, a Wake County resident and father of a 3-year-old with Down Syndrome, said he's realized since his son was born "the state is just dramatically underserving this population."

Grant and his wife, Tania, just began the paperwork to get Silas on the wait list with Alliance Health. He said a representative there told him Alliance is just now enrolling people who signed up for the waiver in 2008.

"We're very lucky," Grant said because Silas receives Medicaid, because he was born in Missouri and qualified for it there, before the Grants adopted him. He also has access to speech and occupational therapies right now.

But they're already focused on when he turns 18 and beyond, when they'll want him to have as much independence as possible, have a job and possibly live on his own with a roommate who receives assistance like him.

"We're very much worried about when he's adult," Grant said.

"We certainly don't want to see him in an institution."

'Did we do all we could?'

When the Branans moved last year from Hillsborough, they thought about going to different places in the region but settled on the Chapel Hill-Carrboro area for the schools and the network of families.

Laura Branan has friends locally who are in similar situations, which helps in figuring things out. But some of their children receive the waiver, and it can be tough to see how the services are helping others.

"You know, sometimes I get jealous of other families that have the waiver," she said. "But I don't say anything because they're friends."

Joe is often exhausted when he gets home at 4 p.m. When the attention was off him for a moment at 5 p.m. Tuesday, he sat down on the couch and fell asleep.

But most days he likes to walk around the neighborhood with his headphones on when he gets home -- his parents keep a tracker on his phone because he's wandered off before. Laura Branan is trying to find a running partner for her son so he can join the school's track team part time.

While they try to get him in any activities they can as he transitions to adulthood, the Branans sometimes reflect on everything they could and couldn't do as he was growing up.

They wonder, if Joe had received services through the waiver when he was younger, whether he might have been able to learn more cognitive skills.

"Say we had to wait six years or something," Laura Branan said. "And if we had had 20 hours a week of help ... He definitely would have more language, more friends, he'd probably be able to go out in the community."

Community services like parks and recreation programs have been helpful, but they don't last long and Joe's family members are still his caretakers when he goes home. With the wavier, a person with a disability can get trained support staff throughout the day. Short group activities are "something but not enough,' said Laura Branan.

"You look back and ask yourself 'Did we do all we could?'" Andrew Branan said. "And I don't really know the answer."

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