By Taylor Sisk
“She’s just such a wonderful mother,” Jill Long says of Monica Benge.
That’s no small compliment under any circumstances, but Benge’s circumstances are considerable.
Benge is mom to a son, Bradley, with cerebral palsy. Bradley is a well-adjusted young man just entering adulthood, but he requires a lot of care.
Benge and his family are Long’s clients. She’s a care coordinator with Smoky Mountain LME/MCO, the managed care organization responsible for public funds for mental health, substance use and intellectual and developmental disability services in 23 mostly rural western counties.
The Benges live in Hays, a Wilkes County community of about 1,700 residents located two hours northeast of Asheville.
Bradley Benge receives assistance through the North Carolina Innovations Waiver, a Medicaid program that provides services and supports for people with intellectual and other related developmental disabilities. It’s available to those who would otherwise need to be in a care facility.
The purpose of the waiver is to allow people to remain in their homes and thrive in their communities.
Benge is fortunate to have a waiver slot. Currently, about 10,000 to 12,000 people with intellectual and developmental disabilities across the state are waiting for a chance to receive such services. For most on the waiting list, it will take more than seven years to get the kinds of services Benge receives.
This year, advocates had hoped to see waiver slots added by the General Assembly. In the version of the state budget passed in May, House lawmakers added money for a case management pilot program for people on the waiting list.
That language was removed in subsequent and final versions of the budget.
For people like Bradley Benge, receiving these services makes all the difference in the quality of their lives.
The Smoky Mountain Care Coordination team functions as an information hub, coordinating the roles of numerous agencies and systems – schools, social services, primary care, vocational therapists, behavioral health specialists and others. Coordinators help map a strategic plan and identify specific goals.
The objective is to focus on each individual’s needs and to encourage and facilitate family involvement. Rhonda Cox, Smoky Mountain’s director of care coordination, stresses the agency has a broad definition of “family” and works to help develop personal relationships.
This approach to care for an individual facing challenges each day requires, first, a strong will within that individual. It then requires the insightful coordination of someone who has the big picture in focus.
“Without Jill, I truly would be lost,” Monica Benge said. “Without the services that I have, Bradley’s life would not be where it is today.”
Equally critical though to Bradley’s optimal integration within his community is Monica’s resolve to see it through.
This can be particularly challenging in more rural, underserved areas. But it can be done.
Dan the Man
Dan Murphy is the proprietor of Dan the Man’s Snax, a distributor of snack-box displays to Wilkes County businesses. Among Murphy’s clients are Electric Steel Tattoo Studio, Crossroads Harley-Davidson and Smoky Mountain’s North Wilkesboro office.
Heather McGroarty, another Smoky Mountain care coordinator, helped Murphy – who, like Bradley Benge, lives with cerebral palsy – connect with employment support services under the Innovations Waiver. She also connected him with Joey Childress, who spends roughly 12 hours a day, six days a week with Murphy. Childress helps prepare him for the day and assists with his business. They attend movies together.
Murphy, 28, loves movies – comedies, horror, romance, action – and would like to one day own a theater.
He doesn’t believe his quality of life in North Wilkesboro would be much different than if he lived in, say, Winston-Salem or Charlotte. His mother, Vickie Murphy, agrees. She sees to it that the family takes advantage of everything available.
“I’m going to dig into whatever I can find to dig into,” she said. “I’m not going to sit back and wait.”
She finds McGroarty’s assistance invaluable: “She has a lot of connections and can answer any questions. I feel very comfortable calling her.”
Dan said McGroarty offers moral support and everyday advice. She encouraged him to join the YMCA, where he now swims. He loves it.
He sometimes grapples with depression; McGroarty found a therapist she thought might be a good fit, and that’s going well.
Dan’s considering taking up yoga, but hasn’t quite yet gotten around to it. But he spends time each day with a meditation video. It’s helped calm him.
He does volunteer work at the senior center and his church. His mom would like to see him do more of that – more of everything that keeps him involved in his community and as independent-minded as possible.
“I won’t be here forever, and I want him to be prepared.”
“Dan is very social, so I’m not too concerned about that part,” she said. It’s more about personal care and safety.
McGroarty will help chart that course to greater self-dependence. That’s a considerable comfort to the family.
“Heather came in our life and helped not only Dan but my husband and myself,” Vickie Murphy said. “She taught us there are things out there that make life better. My quality of life began to change. Before Heather, I used to have to scream and cry to get things done for Dan.
“She’s much more than a case manager to us.”
Dan likes the idea of the independence that would come with having his own place. Independence is important to him.
McGroarty is inspired by his drive: “He wakes up in the morning and says, ‘What are we doing today?’”
Bradley Benge: Into adulthood
Bradley Benge has a particular spot in the center of the living room from which he likes to hold court – his “hole,” he calls it.
On a recent late afternoon, just moments after returning from a school day at North Wilkes High, he settled there, discussing a few things he has to look forward to.
In two days, he’s headed to Morganton, an hour and change down Hwy. 18, to spend the weekend at a respite house. He’ll hang out, watch some TV, and, he added, amused, it will allow him to “get away from mean ol’ Mama.”
Benge is also looking ahead to finishing his final year at North Wilkes. It’ll be a big transition – less structure outside his very well-structured home, new challenges, new opportunities.
On May 26, Benge turns 22, a young man contemplating his future.
Jill Long serves the same role in the Benge home as McGroarty does in the Murphy’s. She works with him on his goals: exercise, shopping skills, vocational training. Smoky Mountain has helped with some modifications to his bedroom and shower. Long helps track down services as needed.
“Honestly, I’d probably be lost without a care coordinator,” Monica Benge said.
Long helped find for the family the respite facility.
“We enjoy having Bradley home so very much,” Monica said. “However, I believe he’s at that age where it would do him good to learn [about] other people. He knows this as much as I do.”
After all, “He’s 21 years old,” Bradley’s dad, Eddie, pointed out. A guy needs a little time away from the folks.
“He’s just a delightful young man,” Long said. “Bradley isn’t a person who makes excuses for his limitations. He says, ‘I want to do that,’ and he does whatever he can to make whatever that is happen.”
Tough love
Monica Benge sometimes has to play the tough-love role. As the mom, it comes with the turf.
Bradley sometimes goes to a woodworking shop to help build birdhouses. But he says it’s too hot in there.
“What do I say, Bradley, when you tell me that?” his mom asks. “‘Too bad. Suck it up,’” Bradley replies. “‘Suck if up,’” Mom confirms. “‘We all gotta work.’”
Bradley’s life goal is to work at Walmart as a greeter. The family visits the store frequently. The outings allow Bradley to develop his shopping skills. But it’s also about letting everyone there learn who the Benges are.
The prospects for that employment remain, as yet, dim. Monica said a high school counselor told her that Bradley doesn’t enunciate clearly enough for the job. He has a speaking device but doesn’t use it because he feels it creates a physical barrier in the conversation and is too slow.
Monica Benge has no illusions about her son’s professional prospects.
“There’s very little out there for Bradley, she said. “That’s just cold, hard facts. Bradley knows it, I know it and everybody knows it. But we are going to push, push, push for him to get his dream job.”
In 2014, only 17.1 percent of persons with a disability were employed, according to U.S. Bureau of Labor Statistics.
Nonetheless, Long remains optimistic.
“Who knows what’s in Bradley’s future,” she said. “He is so motivated and so bright.” She’ll help the family draw up a new plan for when he graduates.
“Because he is so motivated, I can see that Bradley is going to work really hard at getting out into the community,” Long said. The Innovations Waiver provides for a service called Community Networking that helps clients develop relationships.
“His attitude is going to carry him far,” Long affirmed. Her ambition is for Bradley to be “as integrated into this community as he can be … and for him to pursue the goals that he has set for himself. And I think that [the Innovations Waiver] will help him do that.”
One goal, then the next
As elusive as the achievement of long-term goals might sometimes seem, daily ones abound.
On a recent morning, Dan Murphy called his mom into his room and asked if she knew anyone who’s perfect. She said that no, she didn’t, and then asked why he’d posed the question.
“He said, ‘I’m not perfect either,’” Vickie Murphy recalled. “I said, ‘But you do good things and I’m proud of you and you make me smile.’”
Dan then offered his ambition for the day: Make people smile.
In recounting this story, Vickie Murphy acknowledges it as a “warm fuzzy” – but tells it by way of making a practical point.
Of Heather McGroarty, she said, “She changed our life. She made Dan happier and that makes me happier.”
[box style=”2″]This story was made possible by a grant from the Winston-Salem Foundation to examine issues in rural health in North Carolina. [/box]
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I applaud these Care Coordinators for going the extra mile to provide support not only for individuals but for families. If we “natural supports” otherwise known as mom, dad, grandmother, grandpa, sister brother, etc. don’t receive any support, then we are more at risk for stress related health and mental health problems. The system wants mom and dad to keep their role as primary caregiver to their adult children with multiple and/or intense challenges. In order to do that we need to be as well as we can be. Yet it is very rare that necessary supports are given to family. As a parent with an adult son receiving Innovation waiver services I am astounded by this story. The reason for my astonishment is that this type of care coordination is unheard of in other geographic areas of North Carolina. I believe that there is a vast difference in the quality of care given depending upon which MCO manages your child’s services. For example, this level of support is not happening in Wake County. It certainly is not happening with Alliance Behavioral Healthcare. The Care Coordinators here openly tell us that they are not paid to advocate. It is not in their job description. The beginning sentence of this article states that: “Care
coordinators help connect individuals and their families to resources and
relationships within their communities.” No, that is absolutely not happening here. I am wondering if this is an entirely different service under the waiver because here in Wake County, no Care Coordinator does these things, ever. We can’t even get a list of doctors or providers from them. Connecting us to resources in the community? No. Not once. Not even an email listing events in the community. We are told this is the job of our provider agency. I could go on with many more comparison examples but I think you get the gist. Sadly, it has been our personal experience, that the service of Care Coordination is very lacking in either care or coordination.