Arc of Support
Arc of Mecklenburg County provides support for some of our most challenged citizens, and now it's facing challenges of its own
Jim Woolsey, his wife Sandra and their son Ted taking the Lynx System downtown to the public library.
In the past twelve months, Jim Woolsey has made, in his estimate, twenty-two phone calls to the North Carolina state Legislature.
Each call is a plea for help for North Carolina’s nonprofits: He points out the immediate need for funding and the countless lives that funding would affect. Woolsey’s calls, though, concern one organization in particular, and one particular life.
Woolsey is serving his fourth term on the board of the Arc of Mecklenburg County, an organization that fights for the advocacy, protection, and well being of Charlotte’s developmentally disabled citizens. He and his family — wife Sandra and son Ted, who has a developmental disability — joined a chapter of the Arc in Wisconsin in 1963, when Ted was just three years old. Back then, Sandra recalls, the organization’s official name was NARC — the National Association for Retarded Children.
"I think it was in the mid-eighties, they started to realize the name upset some people, and wanted to take into account that national perspective," she remembers. "We had just sort of grown up with it, but we understood."
In the decades they have spent with the Arc, Jim, Sandra, and Ted, now forty-nine, have seen it undergo many such transformations. They were there to see the Arc support the Special Olympics before the program could stand on its own. They watched it start a preschool in the Milwaukee area for developmentally disabled children, then hand over the school’s reins to the state in hopes of saving time and resources for more individual advocacy.
The Woolseys’ intimate history with the Arc, and the overwhelming number of families with similar stories, cast a nostalgic cloud over the program’s most recent fundraiser, where I met the Woolseys and a few of the Arc’s other Mecklenburg County members.
Held in the gym of a remote Mint Hill church on a Friday night in July, the barbecue and talent show drew a small crowd, with an unsettling amount of folding plastic chairs still empty at the show’s start. I walked hesitantly into the yellow glow of the gym’s lighting; immediately, a petite blonde woman with an uncompromising smile approached and invited me to get in line for the pork-and-beans buffet.
Lauren Mullis, the Arc’s bubbly and enthusiastic executive director, has worked with the organization for five years at its office on Park Road. This evening, she seemed unrattled by the fundraiser’s slim attendance, a front at odds with concerns she has voiced this year in newsletters and press releases detailing grim budget cuts.
Mullis, now the Arc of Mecklenburg County’s sole full-time employee, started her career with the Arc as the advocacy coordinator. Advocacy, she says, is at the heart of what the Arc hopes to achieve for its constituents. The Arc wants to make sure that persons with disabilities (the agency is particular about using "person first" language) can fully access the opportunities in their environment, and that they are always afforded those opportunities.
"It’s complicated to explain to people what we do. People often don’t understand advocacy, or don’t understand developmental disabilities unless they know someone personally who has been touched by one," Mullis says. "We want to give these people the best life they can live, and we’re willing to work very hard to give them the same opportunities as everyone else."
Developmental disabilities, Mullis explains to me, are intellectual disabilities diagnosed by the age of three, or ones that physicians determine were present before that age (for instance, doctors often diagnose autism in children older than three, but consider the condition to have been present since before the age of diagnosis). In large part, the Arc hopes to advocate for the rights of those with these disabilities by educating their parents, families, and fellow community members through a variety of programs and activities.
The Arc holds quarterly workshops for families that deal with common issues in the lives of those with disabilities, including individualized education programs, school-to-adulthood transitions, and steps parents should take with recently diagnosed children. Other Arc programs include adult community service clubs, a fetal alcohol syndrome awareness committee, and an all-inclusive children’s program that promotes understanding and respect between children and their disabled peers.
It is the Arc’s individualized advocacy for the people and families it supports, however, that primarily characterizes the organization’s work.
When they lived in Wisconson, the Woolseys had a neighbor who worked as a public health nurse, and when Sandra and Jim began to wonder about the real nature of their son’s disability, she pointed them in what was then NARC’s direction. At the time the family started using the organization as a resource, they knew very little about Ted’s disability, working with only a vague diagnosis of physical and mental retardation from his physician.
"One doctor said, ‘Oh, he’s just slow,’" Sandra chuckles. "As time went on, though, we knew it was more than that."
At age ten, Ted finally received a diagnosis of Williams syndrome, a neurodevelopmental disorder similar to Down syndrome. But the battle to get Ted a decent public education in spite of his disabilities had been underway for years already. There didn’t seem to be any classrooms or teachers with the means or desire to take on a student with special needs.
"When Ted was seven years old, the Arc took over some of the county schools [around Racine, Wisconsin], and he was able to attend those schools," Sandra recalls. "Granted, it was two and a half hours away on the outskirts of the city for an afternoon class, but we did call the Arc for help, and we started to fight for change."
The fight for educational resources for children with development disabilities has progressed significantly since Ted had to bus back and forth to his rural school. Mullis reminds me, though, that advocacy for the basic rights of the disabled is a never-ending project.
"These people don’t get better," she says. "They call us for information and services that they require for decent living."
But the Arc has had to weather what Mullis and the Woolseys call "the perfect storm"—that is, the economic recession coupled with the fallout of United Way’s most recent controversy, both of which have resulted in slashed budgets for nonprofit organizations like the Arc.
"Before we knew what the cuts would be, I was trying to be optimistic," Mullis recalls. "But when we lost $112,000 of United Way funding, which is 44 percent of our budget, it took the breath out of me. I almost couldn’t believe it."
The Arc will have to reduce the amount of services it can provide to its members. K-Kids, the children’s group that was once a monthly club, will only meet quarterly; Operation Santa Claus, which provided holiday gifts to the disabled, will face serious cuts; many of the Aktion Club’s usual activities will be canceled.
Another major hit occurred on August 4, when the North Carolina House and Senate cut $40 million more than anticipated from the state health and human services budget. Mullis’s biggest fear, one she shares with all the Arc’s affiliates, is that these cuts will primarily affect North Carolina’s direct service workers, who provide essential living assistance to the state’s developmentally disabled. Medical assistance, group home support, and employment placement are just a few of the services that will lose employees to major pay cuts, downsizing, or both.
Ted has already felt the trickle-down effect of such cuts; after working for fifteen years as a maintenance worker in a Charlotte office building, a job he got through a supported employment program, he was laid off. The Woolseys remain unsure what his next step should be. Ted’s layoff testifies to the quickly dwindling resources available to many such direct-service agencies, and the rapidly increasing case load the Arc will soon have on its hands.
This already heavy caseload (the Arc directly serves more than 3,000 people in Mecklenburg County) could grow to the point of becoming unmanageable. The 58,000 Mecklenburg citizens who live with disabilities will have few alternatives if they lose their support networks, and many of those will turn to the Arc for help.
"These budget cuts," Mullis warns, "will send all these people, the most fragile of North Carolinians, into a complete tailspin."
"Lauren is going to have to cut the amount of advocacy the Arc can do," Sandra adds. "They always did education programs for parents, but there’s no way to foot the bill for those things now. It’s a shame, because it’s simply hard for the general public to get a picture of how many lives the Arc touches."