Nicholas Medovich waits at the Virginia Museum of Transportation for the steam-driven N&W Class J 611 locomotive to arrive. He knows where every engine was built, where it ran and when it retired, but he doesn’t know how to make friends.
Catherine Medovich’s voice on the other end of the line rushes with excitement. She explains she’s on the way to register her son for a college class. A college class! Imagine that!
Nicholas Medovich, at age 24, is ready to enroll in a basic computer course at Virginia Western Community College, and he and Mom are off to see what assistance the school can offer.
Catherine Medovich is not the typical helicopter mom hovering over her young adult offspring, ready to swoop in and clear his path. Though she’d have every reason to be.
Her son has an autism spectrum disorder. He can recite every steam locomotive ever manufactured, tell you when it was built, for whom, where it ran, why it retired and where it now resides. But he can’t drive a car.
He crafts intricate menus detailing the flavors that spices and wood smoke lend to cuts of meat. Yet he heats his meals in a microwave oven or grabs a sandwich at a nearby shop.
Nicholas Medovich bags groceries at the Towers Shopping Center Kroger in Roanoke. He works 10 hours a week but would like more, and he'd prefer to work in the meat department. The Department for Aging and Rehabilitative Services helped Nicholas, who has an autism spectrum disorder, find the job. DARS considers Nicholas a success because he has remained employed for more than 90 days.
He’s come a long way in a short time. Nicholas Medovich is one of a growing number of young adults with the developmental skills of a child learning to live on his own. In November he moved into an apartment in downtown Roanoke.
He bags groceries for 10 hours a week at the Towers Shopping Center Kroger and would like more hours, a larger paycheck and a job in the meat department. But this is the work his job coaches helped him find and keep.
And now he’s going to college. It is just one class, but it is one class.
“We’re never going to be done raising the bar for him. But he’s never going to be done trying,” his mother said.
While state government officials seek to transform some aid programs, their work isn’t as comprehensive or as fast as families with aging children would like. Public schools are required by federal law to help children, and state lawmakers now require insurance companies to cover diagnosis and treatment for young children. But once children age out of the public school system, they no longer are entitled to any help, and they must compete for limited aid.
In Roanoke, where services lag behind more populated areas, parents want more. Some are launching or helping nonprofit organizations build a network of autism specialists to assist young adults who still need help growing up.
They want parents of young children to understand what’s ahead: Their kids will “transition” out of high school without a guidebook.
Nicholas Medovich and his mom, Catherine, went to Virginia Western Community College on Aug. 14 to register Nicholas for a computer class. He learned he must first take placement tests and worried that he wouldn't do well. He passed both and is now a college student.
“The biggest challenge after all the years of IEPs [individualized education program] is this self-directed services. You have to know what those supports are because no one will tell you,” said Catherine Medovich, who in her role with the Autism Society helps parents navigate the system. “I don’t know how the average family living here knows about what is available unless they are plugged into social media or a network of parents. Nobody is going to find you and make sure you are on a list or to know to make an appointment when your child is 16 years old with DARS, or to insist that DARS is at your IEP.”
Or even what DARS is. It stands for the Department for Aging and Rehabilitative Services and its Division of Rehabilitative Services’ sole function is to help people with barriers to employment find and keep jobs.
Paul Wehman, director of the Autism Center at Virginia Commonwealth University, is working with DARS to change its approach to better help young people with autism. But word is too slow to spread.
Studies prove again and again that good, quality internships and paid employment during high school — even for individuals who are considered low functioning — are the best predictors of employment success following graduation.
Wehman said parents should not wait to look for jobs until their children get state support or age out of the school system, or bother to wring their hands about the lack of services. Nor should they wait for Virginia to catch on that children do not outgrow autism. Parents need to act now.
Otherwise, he said, “by the time they are 25 years old, they haven’t worked and are waiting to get in an adult center where they can color. That’s a tremendous waste of human resources.
“I don’t know if you classify that as a crisis or wait until they jump in the New River. … You are wasting people. Employers aren’t the problem. They’re willing to give them a try if they have a job coach.”
Nicholas Medovich can’t drive a car yet, but he has learned to ride public transportation. He moved into his own apartment in November and, one block at a time, is gaining the confidence to explore farther from his home. On Saturdays, he heads off to meet up with the Roanoke Chapter of the National Railway Historical Society to restore old trains.
Building an adult life
Gathering shopping carts isn’t Nicholas Medovich’s passion but working an unpaid job as a Growth Through Opportunity cadet comes close. Each morning he reports for an hour of duty to hand out cruiser keys to Roanoke police officers. Then on most Saturdays, he heads off with the members of the National Railroad Historical Society to work on restoring train cars.
“One of the things I’d like to do for Nicholas is connect him with the Norfolk Southern police department and plug him in there since law enforcement and trains are his two passions,” said Travis Akins, a crime specialist for the city police force who created Growth Through Opportunity.
As a young child, Nicholas was slow to talk and communicate. The family lived in New Jersey then and took advantage of its more intensive intervention services.
As a Growth Through Opportunity cadet at the Roanoke Police Department, Nicholas Medovich reports each morning for an hour of duty to hand out keys to officers. Though he is a volunteer, Nicholas would like someday to have a career in law enforcement. The police program helps young adults with developmental disabilities gain confidence and job skills.
“We fought the school district. We did all that you hear about with parents who dig in their heels. We pushed for vocational training and made sure he got the skills,” Catherine Medovich said.
When the family moved to Moneta a few years ago, Nicholas’ name was added to Virginia’s developmental disability waiver waiting list. Medicaid waivers, which are hard to obtain, help people with disabilities purchase the services they need to help them live and work. Waivers can cover things like training, job coaching and technology. He’s number 1,602 on the waiting list, so many years will pass before he’s able to access state-supported services.
In the meantime, DARS provided him with job coaches and the Kroger job. He can catch a ride through RADAR to work, his mixed martial arts studio and even a ballgame. His life in Roanoke is much fuller than was possible in his parents’ home.
After eating, Nicholas Medovich cleans the kitchen of his apartment. His parents took a leap of faith in November and helped him move out of the family’s Moneta home so that he’d have a better chance finding opportunities to build an adult life. “It was a little nerve-wracking, but as the months went on I started to understand that you have to snap into reality and figure out what the nice thing to do is. And to be polite, always,” Medovich said about living on his own.
Catherine Medovich made to-do lists and tacked them around her son's apartment to prompt him to do chores in the proper order. "The biggest change of my life is when I got out on my own," Nicholas said.
“We were encouraged to let him live on his own. I know he’s happy, but we’re hyperventilating. There is way more for him in Roanoke than in Moneta, where there is nothing for any kids with developmental disabilities,” Catherine Medovich said.
She fashioned a perpetual calendar to hang on Nicholas’ wall to remind him of where he needs to be and when. He follows detailed checklists, and three sensors wired to appliances signal to his parents whether he got up on time and returned safely to his apartment.
He’s learning to budget his paycheck and Supplemental Security Income, to shop, clean and walk a few blocks farther from his apartment. But he lacks friends and has difficulty picking up the social cues necessary to make some.
“Nicholas, on a scale of one to 10 with 10 being the happiest, what would you be living down here?” his mom asked.
“7.6,” he said.
“What would make it a 10?”
“You can’t get to 10. Closer to a 9.8.”
“What would it take to get to 9.8?”
“Have more friends to come down here,” he said.
Nicholas Medovich moved out of his family’s Moneta home and into a downtown Roanoke apartment in November so that he would be closer to jobs and other opportunities. A large image of trains hangs above his bed and his apartment is full of to-do lists that his mother created to help her son with an autism spectrum disorder with his chores and schedule. “It was a little daunting letting him go on his own. But he keep acquiring more skills,” Catherine Medovich said.
Creating more services
With the right support, more young people with disabilities could live on their own. Angie Leonard, a pioneer in providing services to local children with autism, is now figuring out how to help young adults live rich, fulfilling lives.
Technology is helping.
“There are some really cool things, like electronic check pads that ask, did you get your keys, did you check the stove? It’s a computer program. How much does that cost?” she asked.
Leonard sees opportunities happening in places where people with disabilities live in apartment buildings with others who agree to check on their neighbors for reduced or free rent.
“I think Jefferson College wants students to have these experiences,” she said. “We need the community of Roanoke to come around and support us. We need community leaders to help with that.”
The founder of the Blue Ridge Autism and Achievement Center, Leonard left that post last year to devote her days to helping her son, Joshua, launch an adult life and start an organization that, with state approval, will help others do the same.
Joshua Leonard graduated from Lord Botetourt High School last year at 18, though he could have stayed until he turned 22.
“We decided to let him graduate when the other kids his age graduated, and let his skills develop another way,” Leonard said. His high school offered job coaching at Food Lion, which held little interest for him. Joshua’s parents wanted him to work at a job he enjoyed.
He was accepted into a DARS autism pilot program that provided job coaching to help determine his interests. Joshua now works concessions at Salem Red Sox home games.
“His job coach took note that Joshua loves sports. Food Lion is not his interest. Baseball — oh, yeah — you’re hitting it close to home,” she said. “He’s super excited to go work there.”
DARS considers Joshua a success and closed his case, even though the job is part-time and seasonal. But Leonard said her son is among the luckier ones. He made it through the state’s wait list and has a Medicaid waiver that now pays for job coaching, therapy, life skills training and technology that he needs.
“It’s like the golden ticket,” Leonard said. “The people at DARS are doing the very best they can to provide the best services, but it all comes down to what our state gives in a budgetary way.”
Not all services are equal
Wehman said DARS is doing well at adapting its methods to better work with young adults with autism. It’s not just budgets that are hampering efforts.
“The problem is their hands are tied by the number and quality of vendors,” he said. DARS vendors are firms that gain certification to provide job coaching or counseling or any other service that might be needed to help someone learn and hold a job.
Wehman’s program at VCU is one of nine vendors serving Richmond. Roanoke has a third as many. Wehman was not passing judgment on the quality of local programs, rather on the limitations that come with so few options.
“The critical point is, the quality of the employment outcomes will be directly related to how well they are getting supported by a job coach,” he said. “They may be working with a job coach, but if the job coach is inadequately trained, you get what you pay for by the quality of the provider.”
That soon could change. Leonard is seeking certification for her startup as an employment service organization that counsels adults with autism, and she has spawned another.
Last year, she told her friend Akins, a Roanoke police officer, about the difficulties Joshua and other young adults with developmental disabilities faced in finding jobs they would enjoy.
“He said, ‘Let Joshua come and work with me.’ He thought, ‘Wow, we can really help these individuals.’” Leonard put Akins in touch with DARS to provide job coaching, then with Chief Chris Perkins’ blessing, Growth Through Opportunity was formed at the Roanoke Police Department.
“This is just skill building. It’s not paid employment. They get a uniform and a patch and they look the real deal. They love going there,” she said. “They try to identify the skill set of the individual. A couple of them love shredding paper. To you and I that doesn’t sound fascinating. But there are loads and loads of shredding that need done in a police department. Put these guys in charge of shredding, and they love it.”
Joshua Leonard loves playing the mascot McGruff the Crime Dog.
“We had to teach him not to talk, bark or growl. Joshua would say, ‘I’m going to be a policeman when I turn 21.’ We all know that’s not going to happen, but it’s given him a purpose in life, and he hops out of bed in the morning,” she said. He’s now volunteering with the Botetourt County Sheriff’s Office and helping coach football at Lord Botetourt High School.
Akins said GTO is spreading. Firefighters, sheriffs and government office workers want in on what the Roanoke police discovered: the joy of helping young people find things that interest them while helping them build job skills and confidence. Not all the cadets are interested in law enforcement, but he said they all seem to enjoy having a place to go that both welcomes them and benefits from working with them. No cadet earns a paycheck.
Akins wanted to help cadets gain competitive employment so he recently formed a nonprofit group, Disabilities Resource Network, and is seeking certification to become a DARS vendor.
“Every agency wants to talk about employment, employment, employment,” he said. “We created a six-month GTO program. If all else fails and I’m not successful in getting a GTO cadet gainful employment, I created three services under the nonprofit. Everyone will have a job to fall back on no matter what.”
The services expected to launch later this year include a mobile car wash, mobile grocery shopping and house cleaning.
Adkins said many people have told him they are amazed at how capable GTO cadets are.
“It’s critically important for all of us to determine through an assessment what that individual is good at, what they like to do, what they’re capable of doing and what they’re passionate about,” he said. “Given the opportunity for the individual to flourish, over time, despite what an agency might have the funding for, I think you will see a lot more individuals thrive.
‘“They are building life skills, job skills, social skills. What they truly are building is confidence that is so needed to succeed. Once you can boost them up and give them the confidence to succeed you’d be amazed at what they can do.”
Each morning during the school year, Khamani Jones ran to the living room window to watch for the school bus to take him to the Minnick School’s Starkey Station. Lutheran Family Services created the school to help teens with autism transition into adulthood. Khamani graduated in May. Minnick wants to create additional services to help adults with developmental disabilities become more independent.
‘This is my adult life’
Khamani Jones sits at his kitchen table with his foster parents, Leslie and Kevin Jordan, and slowly counts out serving sizes of mini pretzels to package into snack bags for later.
“Eighteen, 19,” he says, breaking into a wide grin.
“How many are there supposed to be?” Leslie Jordan asks.
“Eighteen,” he says, still smiling, knowing he’ll get to eat his mistake.
At 23, Khamani has an infectious smile and a humongous love of animals. He wants to go shopping at Toys R Us to add to his big bag of toy dinosaurs.
Leslie Jordan often reads a book in the evenings to 23-year-old Khamani Jones. The story on May 21 was about dinosaurs, one of Khamani's favorite toys. He moved in with Leslie Jordan two years ago when she agreed to foster adults through Lutheran Family Services' home caregiver program. Khamani could do very little for himself before Leslie and her husband, Kevin, began teaching him how to help in the kitchen, take out trash, make his bed and eat healthier. "He is very teachable," Leslie Jordan said.
“When he first came here, he hissed like a snake,” Jordan said. “I told him, Khamani you’re a human being, not an animal. I didn’t think he picked it up, but then one day he said, ‘I’m a human being, Miss Leslie. I’m not an animal.’”
In the nearly two years he’s been with the Jordans, Khamani has learned to talk more than grunt, straighten his Mario bedcover each morning, take care of his laundry, take out the trash and pack his lunch.
He’s very teachable, she said.
“If you show him something six times, he gets it,” she said.
Khamani hand-prints a grocery list of food he would like from the store.
“When he came, he couldn’t do that. He’d take the Kroger and Wal-Mart ads and draw circles to tell us what food he wants,” she said.
Khamani Jones does a crossword puzzle with his caretaker Leslie Jordan at his side in the kitchen of their home in Roanoke on Saturday May, 2, 2015. Jordan encourages Khamani to learn and explains that he is a quick learner and great helper around the house. Leslie has also helped Khamani to be on a healthy diet. He has lost 60 pounds since living with the Jordans. " He's like a whole different person." said Leslie.
Khamani Jones does a word-find puzzle at the kitchen table of his home with the Jordans. Leslie Jordan said he is a quick learner and great helper around the house.
The Jordans understand the challenges Khamani faces but they want to teach him to speak for himself.
“If there ever came a time he was out on his own, a group home or whatever, I want that he’d be able to protect himself, be independent and that he would be able to work. It would be nice to see him out in the community,” Leslie Jordan said. “If he’s approached with the right job, he’d be great.”
She sees a future for him in packaging food or in greeting people.
“He likes to shake people’s hands. We got him cards to hand out because not everyone wants to shake hands. They see facial hair but don’t know he has a child-like heart,” she said.
Khamani Jones (center), 23, and Larry Black, 60, feed a horse an apple at Healing Strides in Boones Mill. Foster parents Leslie and Kevin Jordan took them to the farm in May, one of many outings the Jordans schedule to help Khamani learn and grow more independent.
Khamani graduated this year from the Minnick School’s Starkey Station, set in an office building on Merriman Road across from Penn Forest Elementary School.
Lutheran Family Services of Virginia opened this second Minnick school in Roanoke about four years ago to help teens with autism transition into adulthood. These are the kids who are too disruptive or challenging to stay in public schools. Because they’re entitled to an education until they reach age 22, their home school districts pay the tuition.
Students spend part of the day at the school and another part working jobs in the community with their teachers as coaches.
Jonathan Moralde, a teaching assistant at the Minnick School's Starkey Station, helps Khamani Jones find a game to play on the computer.
“We have academic classrooms but the main area is for life skills: the bedroom, kitchen. Making your own meals, which are part of everyday life,” said educational coordinator Kimberly Irvin. “When you become an adult, what are you going to do? Someone’s not always going to be there to make lunch.”
They also learn how to file, type and do other clerical work; to wash clothes and sweep and mop floors; and minor restaurant tasks such as folding napkins.
“We are looking at the workforce and what are the very bare-bones basic things that students need to do,” Irvin said. “We’re trying to find things they are interested in and have the aptitude.”
Many of the students are considered low functioning. But they can learn to live on their own and fill their days with purposeful work, she said.
Khamani Jones washes tables in the canteen of the Salem VA Medical Center in May. As part of the school day, Minnick School teachers take students to job sites to learn vocational skills that might be attractive to employers.
A few have graduated.
“The first graduate worked for about a year, and he’s not been employed since,” Irvin said. “The other two are quite successful. They live in a group home and a more independent situation. They have this sense, ‘This is my adult life.’ They live with people their own age, develop romantic relationships, work, and Mom and Dad come to visit.”
Lutheran Family Services wants to do more.
“There are very few programs in the valley now that cater to adults with special needs,” Irvin said. “We have some very high-functioning, well-behaved students, and they’ll go on to be successful. And then we have some nonverbal students, and there’s not a lot of support for that demographic in the valley.”
Jonathan Linkous (left) and Khamani Jones play in the grass at Starkey Park during a graduation end-of-the-year picnic hosted by their school. The Minnick School’s Starkey Station works with teenagers with autism when their public schools are unable to help them. The school has two eight-student classrooms and is seeking to expand.
Lutheran Family Services is applying for accreditation that will allow it to offer services through DARS for young adults with autism.
“We do all of these things for children, and we forget they are growing up,” Irvin said, noting that during the past decade parents have demanded, and received, more services for children with autism. “So you have this first generation of kids that are getting the attention and services they need. Now these first-generation students are 18, 20, 21.”
They still need services. Parents are finding, just as they did when their children were 3, they will need to push for and create them.
“We need to look at what the individual needs,” Irvin said. “Yes, they have some outbursts. Let’s have people trained to deal with that so we can look at making them as adults to be successful. If you can get them doing something they love day after day, they will be.”
Khamani Jones puts on his graduation cap with the help of his teacher Katie Lineback before his May 22 graduation celebration at Starkey Park. Khamani attended the Minnick School's Starkey Station, which helps teens with autism transition to adulthood.