RALEIGH, N.C. (WNCN) – Eating breakfast, getting dressed, even having a conversation — most of us do these tasks every day and never think twice. However, many people with disabilities depend on others for those basic needs.
This month, a judge ordered the state of North Carolina to make changes, so more people with disabilities can live at home and receive services in their communities.
But right now, thousands said they still don’t have the help they need.
Sarah Alden, 20, has leaned on her family for every need for her entire life. Her cerebral palsy means she requires help around the clock.
“We need hands-on for transitioning, any seating or position changing, using the restroom, washing our hands,” her mom, Laura Alden, said. “We have always made our job and career choices based on making sure someone is always available for Sarah because we’ve never had any aid outside of ourselves or our family.”
That’s not for lack of trying.
Laura Alden said her daughter is on a waiting list for a Medicaid program that can provide in-home care and other services. It’s called the North Carolina Innovations Waiver.
“The North Carolina Innovations Waiver is a way for the state to pay for support services for individuals with intellectual and developmental disabilities, in their home,” Dave Richard, the Deputy Secretary for North Carolina Medicaid said. “It’s an alternative to institutional settings. It’s funded by both the state and federal government, so with Medicaid, it’s usually about a 67 percent match from the federal government to the state.”
Kenneth Bausell manages the Medicaid unit that helps people with intellectual and developmental disabilities.
“We currently have capacity to serve 14,138 individuals [with the Innovations Waiver],” he said. “With that said, 1,000 of those slots were added in April of this year (as well as July) so we are working up to get to that 14,138.”
Richard also said those slots are appropriated by the General Assembly.
While more than 14,000 people are receiving services, more than 16,000, including Sarah Alden, are still waiting.
“We’re on that list for 13 years now,” Laura Alden said. “It’s a very long time to not have any help.”
According to Richard, nearly half of the people on the waiting list, that is known as the “Registry of Unmet Needs”, do receive some sort of Medicaid or state-funded services, but not as extensive as the Innovations Waiver would provide.
Laura Alden worries about what will happen when Sarah finishes high school, if they still don’t have help at home.
“What am I going to do? Quit my job when she graduates?”
The Aldens hope to receive services by then, but they know getting off of the waiting list is only one piece of the puzzle.
Meanwhile, Talley Wells, the executive director of the North Carolina Council on Developmental Disabilities, described the situation as, “A 5-alarm fire for the disability community.”
“We have a two-fold crisis,” he said. “We have those on the waiting list and those who are receiving services but don’t have the workers to provide those services.”
That crisis recently became very real for Bryan Dooley.
He is one of the more than 14,000 people with the Innovations Waiver.
David Owen has served as his direct support professional for more than 6 years.
“Basically, I help him with, what is called, activities of daily living,” Owen said.
In addition to assisting with basic needs, Owen helps Dooley communicate and get where he needs to go.
“He’s basically my best friend, therapist. I tell him everything; he tells me everything. We go through it all together,” Owen said. “It’s going to be weird when I leave him.”
As much as he values the friendship he and Dooley have developed, Owen said he simply can’t make this job work anymore.
Advocates said he’s one of many direct support professionals leaving their jobs for opportunities with better pay and hours.
“There’s a workforce crisis,” Wells said. “I drive by Bojangles every day, and they’re advertising $15 an hour. That’s two or three dollars more than we’re paying direct support professionals in this state to help folks with the basic activities of daily living they need, so there’s just not enough workers right now.”
Richard agreed — it’s primarily, a matter of money.
“The first step is that we’ve got to pay a living wage,” Dave Richard said. “We are working really closely with the General Assembly to try to get additional funds so we can raise the rates.”
He continued, “They raised the rates last year by $2.15, which was really helpful. We hope to have a similar kind of thing with the General Assembly this year.”
But Dooley needs someone now.
Otherwise, he’ll have to move in with his grandparents who are in their 80s and 45 minutes from his home and work.
“That’ll obviously have an impact on my job, which I love, my job,” he said.
His job centers around keeping people with disabilities in the community, and he can’t help but see the irony, realizing his own independence could be in jeopardy.
“There is a big crisis right now,” he said. “People like me are eventually going to get hurt.”
Earlier this month, a judge ordered the state of North Carolina to provide services to people who need them, so that within 10 years there is no longer a waiting list for the Innovations Waiver.
The judge also ordered the state to address the shortage of direct support professionals and to transition people with intellectual and developmental disabilities from institutions to community-based settings.
Complying with the order will require significant funding from lawmakers.
The North Carolina Department of Health and Human Services released the following statement: “We are still reviewing our legal options. NCDHHS remains committed to providing high-quality community support for people with I/DD [Intellectual and developmental disabilities].