Above: Landry, age 2, shopping with The Arc staff at Wegmans.
Doing it All for the Developmentally Disabled One Person at a Time
Story and Photos by Robin Earl
Where do thousands of developmentally and intellectually disabled children and adults – and their families – find support in Prince William County? At the Arc of Greater Prince William.
From childcare for special needs children, to helping students with autism transition from school to the workforce, to educating parents on how best to help their children, The Arc does it all, one person at a time.
For The Arc’s 330 employees and more than 200 volunteers, the work is not just a job, it’s a calling. Chris Caseman, director of resource development, had a long career with Exxon Mobil, but said that it wasn’t until he retired that he finally found his true mission.
“I had a prominent job, but there was not a single day I had an impact on the organization. Here, I have an impact every day.”
The Arc of Greater Prince William provides a variety of services across the community and manages 31 facilities, including group homes, childcare centers, adult day programs and recreation facilities. The main headquarters is in Dale City; it includes a childcare center, an adult day program, recreation rooms, and education and administration space.
Jan Russell, family support coordinator, has been with The Arc for 23 years. She said, “I had to go out on medical leave for about a month. When I left, Sammie, who is 3 or 4 years old, couldn’t walk. By the time I came back, she ran to me. That’s the kind of difference we can make.”
Karen Smith has been executive director of The Arc of Greater Prince William for more than 50 years and, while she’s fought tooth and nail for folks with developmental disabilities the entire time, the work still touches her heart.
“When our folks get sick and go to the hospital, a staff person goes with them. The nurses and doctors often don’t understand how to work with a person with disabilities, so we’re there for them. They can be fragile. When our people die, they die in the arms of our staff.”
Caseman said that when Smith started, there were three employees and the budget was $26,000. Now the budget is $15 million.
The money to support The Arc comes mostly from Medicaid. Smith explained, “When a family has an individual with significant needs, they go through their local Community Services Board to get on a waiting list for a Medicaid Waiver.” The waivers pay for residential services, adult day and vocational support, and transportation. Childcare doesn’t require a waiver.
Smith said that currently there are 13,000 people waiting for waivers in Virginia. More than 3,100 are on the priority 1 waiting list (where there is immediate risk to the health or safety of the individual in need of care), but that “there is not enough funding.”
Variety of Services
INSIGHT, Inc. the residential component of The Arc, offers adults with intellectual and developmental disabilities the opportunity to enjoy a level of independence in a variety of living situations.
Community residences provide a family-like environment for adults to live together. Counselors assist residents with complex medical needs 24 hours a day/seven days a week, and help them develop new skills. Smith said, “Every group home has a different ‘flavor.’ We try to bring people together who like doing the same things.”
Supported living offers a less structured environment for those capable of living semi-independently. Individuals live alone or with roommates in a house, condo or apartment. Smith said of the supported living groups, “They have jobs during the day; the staff helps with meal prep, banking and other tasks.”
Two licensed developmental childcare facilities – the Muriel Humphrey Center at The Arc headquarters and the Robert Day Center in Old Town Manassas – offer warm, nurturing environments for children and young adults ages six months to 22 years with intellectual and developmental disabilities, including autism. Smith said, “The children we support are those with medical or behavioral needs that cannot be met in a community childcare center or with a sitter. We also serve those children over the age of 12, whereas most centers don’t.”
The Arc also offers a chance for those with intellectual disabilities to find productive work. Spinaweb, a specialty shop in Occoquan, employs weavers who produce handwoven fabric that is made into clothing and placemats, said Smith. “We sell our products all over the U.S.”
Another employment initiative, Little Creek Services, provides janitorial services at locations throughout the community. “No one makes less than minimum wage,” said Smith. She said that the goal of these programs is to integrate those with disabilities into the general population. “We want our folks to be treated with respect and to be as independent as possible, and it’s good for everyone to see people with disabilities contributing in the community.”
The Arc hosts more than 140 recreational activities annually – dances, bowling nights, art classes, yoga, exercise and wellness instruction. Anyone in the community can attend, said Smith. “Our dances are unique. Everyone is on the dance floor the whole time. And if we say the music stops at 9:30, you’d better not turn it off at 9:28!”
The Arc also sponsors a local International Lions Club for individuals with intellectual disabilities. Members meet at the Dale City Arc headquarters to plan various activities and fundraisers. “It’s a way for them to give back,” said Smith. “They organize food drives, collect eyeglasses; they are a very active Lions Club group. And they have some interaction with other local Lions Clubs.”
Individuals attending adult day services are picked up and dropped off at their homes via the Arc’s fleet of 50 vehicles. Most are wheelchair accessible and all are driven by people trained to work with individuals with disabilities. “They are not just bus drivers. They have to be able to deal with someone having a seizure or a medical emergency.”
Smith said, “There are pick up points in the community for anyone associated with our various recreation offerings.” Those who live in residential homes are provided transportation for day services or anything they are doing – from doctor visits to getting to work. For community activities, like weekly bowling, drivers pick up participants from the local high schools. Childcare transportation, while unavailable for pick up and drop off, is available for field trips.
A big part of The Arc is helping parents and caregivers cope with the physical and emotional challenges of caring for an intellectually disabled person. Family support coordinator Jan Russell spends her days working with families who are sometimes overwhelmed by the responsibilities involved.
In addition to working with families, Russell organizes frequent educational seminars that address practical questions such as how to navigate special education in the public school system and the ins and outs of special education law and advocacy.
Circle of Support
Every year since 1994 The Arc has hosted its Circle of Support Conference. “It was originally a conference for early intervention, and then we expanded to help families learn all the resources available in the community,” Russell said. Last year’s event featured dozens of workshops and drew 450 attendees. This year’s Conference will feature 50 workshops and is scheduled for Saturday, November 2 at Hylton High School. For information, call 703-670-4800 or visit arcgpw.org.
Open Mic Gives Students in Transition a Voice
Every other month, The ARC of Greater Prince William sponsors an open mic night for students making the transition to adulthood. At the open mic in February, there were 20 such young people in attendance, most of whom are on the autism spectrum. Several were still in high school while others were relatively recent high school graduates.
Because this group discussion was focused on the transition that students face after high school, Joy Ocetnik, director of recreation and training, and moderator for the evening, asked the group what they thought they’d like to do after school. She started with Alyssa and Amber, who are still in high school.
“I’d like to live in a group home with other girls my age,” Alyssa said. “I’d like to one day get married and have a family. I plan on going to college.”
Amber, who will graduate from Hylton High School in the spring, said, “I’m not ready to leave yet; I’ve made so many memories. It’s an emotional time for me. I’m excited to graduate. I’d like to go to college. I’m interested in childcare. Once I graduate I’ll be able to start a new chapter.”
Ocetnik asked those who’ve already left high school if they had any advice for the younger ones in the group. Christine responded to Amber, saying, “Don’t be stressed about it. Be yourself. I’m here for you.”
Danny offered, “Be aware that there are plenty of resources out there. You don’t have to do college on your own.”
Jeffrey spoke with gravity, “Don’t rush into anything. Take your time. Figure out what you are interested in.”
When Ocetnik asked participants to talk about what struggles they’ve faced since graduating high school, several expressed concern about their health. Christine said that she struggles with being overweight, “It’s hard to get the weight off.”
The others agreed that this was difficult, but had some suggestions: join a gym; join the Special Olympics; try the ARC exercise class held on Thursday nights at Hylton High School; find a friend to exercise with.
Rob said that while he is searching for a cure for his disability, he tries to keep in shape and says he does pull ups from his wheelchair. He grinned as he pushed up his sleeve to show off an impressive bicep muscle.
The discussion turned to employment. Several of the students have jobs. Ben works at BJs; Jeffrey works in doggy daycare; Amber has a job at Food Lion; Danny works at Ace Hardware.
Ocetnik said, “It’s important to get out in the community. If you can’t find a job right away, find a way to volunteer. It can help you develop skills… answering phones, using a copier. it’s important to get connected. The Special Olympics, church activities, these can all be good ways to get connected. Janelle volunteered here at ARC. I’m pretty sure she wants to have my job.”
As the session was wrapping up, Ocetnik asked, “Does anyone else have any suggestions?”
Matt, who had been quiet most of the evening, demurred, “I don’t have any advice for anyone. Honestly, I just came for the pizza.”