By Taylor Knopf
For North Carolinians with intellectual and developmental disabilities, getting mental health treatment and other services that enable someone to live at home can be challenging.
Many parents and caregivers add their children with disabilities to a statewide waiting list to receive services under something called the Innovations Waiver, a North Carolina Medicaid program for people with disabilities who need regular assistance to continue living independently. Receiving these services can prevent people with disabilities from having no choice other than to live in a group home or other institutional setting.
One Chatham County mother told NC Health News that she felt as if her teenage son with autism “hit the mental health care jackpot” when he finally got on the Innovations Waiver a few years ago.
Prior to receiving the Innovations Waiver, Bridget Narsh’s son Mason had been in and out of emergency rooms and psychiatric hospitals because there were so few other resources to help him.
The Innovations Waiver comes with a list of services for the family and the person with disabilities — everything from a certified in-home aid, to a therapy dog, to respite hours for the parents or primary caregiver. Once on the waiver, the recipient can receive these services for life.
Since receiving the waiver services two years ago, Mason has not needed to return to an emergency room. His mood has improved and Narsh said it’s been a year since he’s had any significant behavioral episodes. Now if something happens, Narsh said her first response would be to call Mason’s three-person, intensive in-home care team for help instead of heading to the hospital.
“Our whole experience just has improved,” she said. “It’s been really steady with him, and I haven’t had to call for an emergency person to come.”
Mason now has a trained service dog named Koko. Narsh said the dog helps ease Mason’s anxiety and has made it easier for him to leave the house. Koko has even alerted Narsh to times when her son’s anxiety is elevated.
“I feel like Koko’s been a service dog for our entire family,” she said. “It was rough living with him and the huge behavioral escalations.”
Many people eagerly hope for these services for their loved ones, but they are really hard to get and the waitlist is over a decade long. So it really can feel like winning the lottery for these individuals and families.
Though the waiver slots are awarded on a first-come, first-served basis — which should indicate equal access — a recent study of Innovations Waiver recipients in North Carolina found racial, gender, geographic and age inequities among those who receive services.
Getting on the waitlist
“If you’re white or if you’re a man or you live in a city and if you’re over 21, you are much more likely to receive this waiver,” said Michelle Franklin, a researcher at Duke and a nurse practitioner at UNC’s Carolina Institute for Developmental Disabilities. Franklin is the lead author of the report “Inequities in Receipt of the North Carolina Medicaid Waiver Among Individuals with Intellectual Disability or Autism Spectrum Disorder” recently published in the Journal of Developmental & Behavioral Pediatrics.
“Our findings demonstrate that people don’t have equal access and there’s unmet need,” Franklin explained. “If we do not do something different, these inequities will get worse because the need is only increasing.”
To begin with, receiving Innovations Waiver services requires knowing the waitlist exists. Then, it’s imperative to sign up a person with disabilities early in life, long before they turn 18 years old and lose the Medicaid services that are available to many children with disabilities. Franklin’s findings show that people from historically marginalized communities or rural areas are less likely to receive the waiver services.
In North Carolina, only 22 percent of people on Medicaid with intellectual and developmental disabilities currently receive Innovations Waiver services. This statistic doesn’t account for people with disabilities who have private insurance, which NC Health News previously reported can be an unlikely, but additional challenge to receiving mental health and community living support for people with disabilities.
A 2018 Kaiser Family Foundation study of 47 states found that North Carolina had the 11th largest waiting list in the United States. The waitlist has only grown since then. In 2021, there were more than 15,000 people on the waiting list for services in North Carolina.
In the latest state budget, the General Assembly included funding for 1,000 additional Innovations Waiver slots. While the disability community applauded the new slots, the increase will only make a small dent in the demand.
Talley Wells, executive director of NC Council on Developmental Disabilities, said there are ongoing efforts to educate health providers and school counselors about the waiver services and waitlist.
“I’ve been amazed at how many psychologists and psychiatrists and other professionals in the system were not aware of the waiting list or the waiver,” Wells said. “If so many people who are sort of connected to the system aren’t aware of it, then individuals who have less connections to our developmental disabilities system are probably going to get in the back of the line a lot more.”
Hope for more services
Meanwhile, Wells is hopeful that North Carolinians with disabilities will soon have more options outside of the Innovations Waiver to receive some key mental health and community living support. North Carolina is in the process of applying for another special Medicaid waiver program called 1915 (i) Medicaid through the federal Centers for Medicare & Medicaid Services. The application is currently under development at the state level, according to a spokesperson for the NC Department of Health and Human Services. It will be posted online for public review prior to submission to CMS.
“1915 (i) Medicaid is going to be a game changer for individuals with intellectual and developmental disabilities who are on the [Innovations Waiver] waiting list and who have Medicaid,” Wells said. “Anyone with Medicaid and who has a qualifying intellectual developmental disability will qualify for 1915 (i) Medicaid services.”
He said those services will support those people with disabilities who are living in the community, opportunities for supported employment, respite services so family members and caregivers can get an occasional break, and services to help people make transitions from home to the community.
While there would still be a broader array of services and more support hours available with the Innovations Waiver, Wells said some of the key services people really want will be available through the 1915 (i) Medicaid waiver program if North Carolina’s application is approved.
He explained that several factors are coming together now that have led the state to apply for this second Medicaid waiver aimed at serving the disability community. Those include North Carolina’s transition to tailored plans for people with disabilities under Medicaid transformation and some funding from the American Rescue Plan Act of 2021.
Importance of early intervention
Currently, the waitlist for Innovations Waiver services is so long, that recipients tend to be well into adulthood by the time they’re awarded services. Franklin’s study of Innovations Waiver recipients over a 12-month period in 2017 and 2018 found the average age of those receiving services was 27.
“We do know that early intervention and services that are well-timed prior to a transition makes a difference,” Franklin said.
Meanwhile, between the time these young people “age out” of the state’s Medicaid program at age 18 and when they get onto waiver services, their families scramble to cobble together care and support.
From her experience as a clinician working with individuals with disabilities and their families, Franklin argues that waiver services would be even more effective if people have access to them earlier in life.
“I was seeing people in crisis, particularly in that transition from adolescence to adulthood when they leave high school, and it’s kind of like, ‘what’s next?,’” she said. “Families have described it as falling off a cliff, not really having the support they need to age into adulthood successfully.
“Here in North Carolina, the Innovations Waiver provides vocational support, so that could be the difference between you graduating to nowhere and sitting at home, versus having vocational support, where you can have somebody to work with to help you find a job and help you be successful in that job,” Franklin explained.
Staying out of the ER
Not only do Innovations Waiver services help people with disabilities navigate community living and employment, they also keep people out of the emergency room.
Franklin reported a 31 percent drop in emergency room visits for Innovations Waiver recipients compared to their peers. In general, people with intellectual and developmental disabilities tend to visit the emergency room more frequently than the rest of the population and have more complex medical needs.
“Fewer ED (emergency department) visits are indicative of better health and preventative care, increased quality of life, and increased utilization of community-based health services,” Franklin said.
“So this is why looking at this data is really valuable because this is a marker for high-quality, preventative care in the community with people that know you versus going to the ED and being in crisis.”