Sponsored by Monday Properties and written by ARLnow, Startup Monday is a weekly column that profiles Arlington-based startups, founders, and other local technology news. Monday Properties is proudly featuring 1515 Wilson Blvd in Rosslyn.
Enabled Intelligence, a startup founded by a longtime Arlington resident and father, is redefining what inclusion of people with disabilities in the workplace looks like.
And it does so while solving a long-standing labor problem for government agencies and contractors trying to automate their operations with artificial intelligence, says CEO and founder Peter Kant.
Enabled Intelligence employs Americans with disabilities and veterans to do data annotation — teaching computers what images or sounds to look for as they are programmed to sift through large data sets — for government and government-adjacent groups.
“It’s technical, repetitive, problem-solving, somewhat compulsive and relatively asocial work,” he said.
This work has to be done by “puzzle solvers who always want an answer” and U.S. citizens to ensure the data stays secure, Kant says. But government groups, which can’t send data annotation overseas like private companies, often struggle to find people to do the work. Kant ran into this problem while leading SRI International, a research institute with a location in Rosslyn.
So he turned to a “highly skilled, underutilized workforce” within the U.S.: people with certain cognitive differences, who have an edge over neurotypical people, and veterans from intelligence and defense agencies, who have helpful subject-matter expertise.
These two groups face barriers to skilled work because of their disabilities, he said.
“Some were bagging groceries but had a computer science degree from Radford University, and because of their neurodiversity, were not working anywhere else,” he said.
Today, 14 of Enabled Intelligence’s 20-person team have disabilities.
“This is not just a company just for people with disabilities, it’s a mix of people neurodiverse and [neurotypical] people,” Kant said.
The mix helps people with disabilities integrate while demonstrating to people without disabilities that cognitive differences can be assets, he said.
Case in point: New annotators were identifying photos where at least 20% of a vehicle was in the frame. The trainer, who had 15 years’ experience teaching this work, explained that when it comes to close calls, they should play it safe and include the photos.
“One of the annotators, literally just looking at a Powerpoint slide in the training room, said, ‘No, no, no, it’s 17%,'” Kant said.
The trainer said it was close enough to include, but the team member insisted it shouldn’t be included. After the meeting, the photo was measured and sure enough, 17% of the car was in-frame.
Another employee is a whiz at computers who was working at a grocery store while pursuing her cosmetology license. She couldn’t keep up with these two jobs, however, due to a brain injury that was giving her seizures.
At Enabled Intelligence, she has quickly moved up the ranks. After getting her start identifying photos, she has been promoted to identifying audio files in a different language — which she has already picked up.
“She’s been a very valuable asset to us,” Kant said.
Kant says Arlington organizations have helped him hire employees and find advisors who understand how to work with people with cognitive differences.
He found employees through local nonprofit Melwood, which provides vocational training to people with disabilities. One of his advisors is Arlington therapist Ginny Conroy, who runs Social Grace, a local group that coaches people with disabilities and works with businesses to hire and retain neurodiverse employees.
Enabled Intelligence got its start in March 2020 but has been insulated from the worst of the economic impacts of the pandemic because government work has been relatively stable, he said. So far, Enabled Intelligence has booked $2.5 million in business and closed on a seed fundraising round that netted $1 million, lead by the Disability Opportunity Fund.
After being fully remote for more than a year, the company moved into its first, temporary brick-and-mortar office building just over the border in Falls Church (6400 Arlington Blvd). In the new year, Kant has his sights set on a permanent office so employees can handle more secure data and he can expand the company’s operations.
(Updated at 5:40 p.m.) A local nonprofit intends to redevelop and add affordable housing for people with disabilities to its property near Crystal City.
Melwood, which connects people with disabilities with public- and private-sector jobs and opportunities, currently runs a workforce development site from the building at 750 23rd Street S., in the Aurora Highlands neighborhood.
It envisions redeveloping the property into a 100% affordable, 104-unit building with about 30 units set aside for people with disabilities. The five-story building would also house workforce development services and community programming.
“This project builds on Melwood’s ongoing commitment to create more inclusive spaces and empower people with disabilities to live, work and thrive in their communities,” the company said in a statement to ARLnow. “By redeveloping the 23rd St. S. property, Melwood and its partners will be addressing another persistent gap for people with disabilities and their path to independence — affordable, accessible housing.”
Melwood took an early step forward by filing an application for a Special General Land Use Plan (GLUP) study this week. The application says the study is needed because the property falls outside of any adopted county sector plan documents.
The Maryland-based nonprofit — which has operated in Northern Virginia for many years — acquired the Arlington property during its merger in 2017 with Linden Resources, a local nonprofit that similarly provided employment opportunities to people with disabilities. Melwood says it began discussing options for the site with community members and stakeholders in 2020.
“From these conversations, Melwood heard the community’s strong interest in leveraging its facility to support affordable housing in addition to Melwood’s existing program offerings,” which currently support about 500 Arlington residents, the nonprofit said.
The proposed apartment building will address the “significant need” for independent, affordable housing for Arlington residents with disabilities, Melwood says, adding that in 2019, 22% of locals with disabilities lived under the poverty line and couldn’t afford housing.
Melwood requests that the county change the land-use designation from “public” to “low-medium” residential uses so that the property can eventually be rezoned for apartments, according to a letter from Catharine Puskar, a land use attorney representing the nonprofit.
The privately owned property is designated for public uses because, until 1981, the building operated as the former Nellie Custis School.
After the school closed, Arlington County swapped the Aurora Highlands property for a parcel near the Ballston Metro station with Sheltered Occupational Center of Northern Virginia, another work center for people with disabilities, the letter said. As part of the land swap, the county gave the center a special permit to operate on land zoned for public uses.
The property includes the tiny, .8-acre Nelly Custis Park. Long before the current iteration of the park was built, a project some objected to, the occupational center had to grant to the county an open space easement for a public park as part of the land swap.
The public easement and the park will stay, but Melwood is allowed to use the parcel to calculate how many units can fit in its proposed apartment building, Puskar said.
(Updated 4:40 p.m.) County commissioners welcome Amazon’s latest revisions to plans for the second phase of its HQ2 in Pentagon City — but are pushing for more greenery and accessibility.
Phase 2 will be anchored by a lush, futuristic building, dubbed “The Helix,” and feature three, 22-story office buildings, three retail pavilions, a childcare center, a permanent home for Arlington Community High School, 2.5 acres of public green space, multi-modal pathways and underground parking.
Amazon is massaging out the details with county staff, commissioners and community representatives to ready the plans for Planning Commission and County Board review, possibly in the spring. The tech giant has already updated the three office buildings, pathways and green spaces in response to requests for more architectural diversity and plantings.
“The team has been careful reviewing all comments and believe together, we are making PenPlace a better project for the entire community,” said Joe Chapman, Amazon’s Director of Global Real Estate and Facilities, during a meeting last night. “We are committed to the process and to the community.”
Project designers presented their changes during a Site Plan Review Committee meeting last night (Monday). County staff, commissioners and community members asked for better accessibility for people with disabilities, more pedestrian safety features, increased tree canopy and even more plants.
“In general, everyone really likes the presentation and appreciates the refinements to the design from the [Long Range Planning Committee] to now, and from the comments raised in the online period,” Planning Commission member Elizabeth Gearin said. “There’s very strong and widespread appreciation for changes to the design, for the early incorporation of sustainability, biophilia and art.”
Still, commissioners recommended leveling the entrances to underground parking garages so drivers have clearer views of pedestrians. They and county staff asked Amazon to revisit a set of stairs leading from Army-Navy Drive to an “elevated forest walk” on the northern end of the site.
“We’d really like to see the stairs removed and replaced with ramp that everyone can use equally,” Gearin said.
Those suggestions follow up on changes Amazon made this summer to the Army-Navy frontage, “to greatly improve what was seen as a foreboding frontage,” county planner Peter Schulz said.
Others called for more and taller trees throughout the site — not just in the “elevated forest.”
“Anything less than towering oak will look out of place next to 22-story buildings,” said Arlington Tree Action Group member Anne Bodine.
(Updated at 10:50 a.m.) A three-story, county-owned group home in Douglas Park is set for demolition early next year.
In its place, Arlington County will oversee the construction of an environmentally friendly home for six adults with disabilities, at a total cost of more than $5 million.
Built in 1924, the house at 1212 S. Irving Street has undergone several renovations and has operated as a group home since the mid-1970s, according to a county report. Today, the 3,800-square foot, seven-bedroom house accommodates five individuals.
But the county says the house needs to be rebuilt.
“This existing residence is aged and in deteriorating condition and will be demolished and replaced with a new two-story family home of approximately 3,000 [square feet],” according to the project page.
The $4 million construction contract for the net-zero group home was approved by the County Board in October. Demolition could begin in January 2022, as could the installation of a geothermal well field that will power the home’s heating and cooling systems, says Claudia Pors, a Department of Environmental Services spokeswoman.
“Right now the contractor (MCN Build) doesn’t want to begin demolition of the current structure until they have materials to build the new home, and demolition isn’t anticipated to begin for another 6-8 weeks,” she said.
The new home will have six bedrooms, including accessible bathrooms and closets, an area for staff and accessible communal living spaces with built-in furnishings and appliances, per the county report. It will be equipped with various audio-visual technologies to support individuals with complex medical support needs.
“Upon completion, the new home will provide a primary and permanent residence for up to six adults with developmental disabilities,” the report said. “It will be constructed to meet the changing needs of the residents across their lifespans, regardless of physical and behavioral support needs.”
Arlington’s Department of Human Services will operate and maintain the house, while a contracted residential provider will have the primary responsibility for caring for residents.
The new 1212 S. Irving Street will be a net-zero energy residence, meaning it generates as much energy as it consumes. It will also be the county’s first Viridiant Net-Zero certified building, Pors said.
“Some of the construction features include an airtight building envelope and high-performance windows and doors that prevent outdoor air from coming in, or loss of conditioned air; less than 50% of impervious area on the property, so stormwater can be absorbed by the ground naturally; and landscaping with non-invasive species,” she said.
Solar panels and geothermal systems will power the building, while energy recovery ventilators will recover heat or cold air, she said. The interior will also feature LED lighting, low-flow plumbing features and Energy Star appliances.
The project is $900,000 over budget, according to the report.
“The total project budget for the 1212 S. Irving St. Group Home project is $5,205,735,” the report says. “This amount is $900,000 over budget, due to the current unstable market conditions, longer construction duration from lagging supply deliveries, and the addition of a sixth bedroom and a kitchenette to satisfy DHS current programming requirements. The construction cost was over a $1 million more than the independent cost estimate received in November 2020.”
When 26-year-old Paralympic swimmer and Arlington local Alyssa Gialamas retired after 10 years as a competitive athlete, she decided to devote her newfound time to helping other people with disabilities get fit.
After competing in London and Rio for the U.S. Paralympic Team, she found inspiration for her next venture closer to home, where she saw few accessible workout opportunities.
“I started going to the gym and noticing there weren’t a lot of resources for people with disabilities,” said Gialamas, who was born with arthrogryposis, a condition that keeps some of the joints in her leg from moving easily.
The athlete drew on her expertise adapting workouts intended for able-bodied people to put together exercises and classes for people with different physical limitations. Last month, she launched a nonprofit organization called Adapt, Move & Gain Fitness to bring her exercises to people with differing abilities.
Gialamas aims to hold her first class in early November, with one class per month after that while the organization gets off the ground.
“There definitely are not adaptive classes here in Arlington, so I think it’ll be really cool to start here,” she said.
Gialamas said her organization taps into a pressing need in the local disability community, which includes more than 8,700 people under 65, according to the 2020 census.
“People with disabilities are three times more likely to have health issues like diabetes and heart disease,” said Gialamas. “There’s such a need for it. That’s why I started it.”
She developed three types of workouts: fully seated “Adapt” workouts, seated or standing “Move” workouts, and fully standing “Gain” workouts. The exercises are free to access.
“I don’t want people to not use these resources due to price,” said Gialamas. “Money will come through strategic partnerships and donations. There are some partners in the works. It’s been really cool to have so many people be excited about it.”
As for where the classes will be located, Gialamas said she hopes to one day operate her nonprofit from her own space. For now, she plans to host events at gyms around Arlington.
Folks can try her approximately 30-minute workouts at home, too.
“All of the workouts right now are on my website so you can do them anywhere, which is super cool,” said Gialamas. “There’s also a community page so if you do a workout you can post about it.”
Gialamas says it’s important for people with disabilities to have classes tailored to them and places to exercise with each other.
“I think there’s a really cool aspect of seeing other people like you, in any sense, and being able to base it [workouts] off of each other is really cool,” she said. “You don’t have to be a Paralympian to feel good in your body and about your disability.”
This photo of two Arlington teens with Down syndrome will appear on JumboTron screens in Times Square this weekend as part of a visibility campaign for people with the genetic condition.
It depicts Connor Garwood, 18, and his girlfriend Sarah Buzby, 16, at a virtual prom held in the Garwood’s workout room last May. The two met in preschool at Ashlawn Elementary School and have been “inseparable” ever since, said Connor’s mom Suzanne.
She said she submitted the photo of Connor, wearing his dad’s tuxedo and embracing Sarah, because it was sweet.
“Yeah, that picture is cute,” Connor said. “She kissed me.”
The photo, selected from more than 2,100 entries, will be one of 500 in the hour-long presentation this Saturday (Sept. 18).
“Connor and Sarah’s photo will be shown on two JumboTron screens in the heart of Times Square, thanks to the support of ClearChannel Outdoor,” a National Down Syndrome Society (NDSS) press release says.
The video will kick off the Buddy Walk in New York City, hosted by the NDSS, which raises awareness about the disability. The video will also be live-streamed on the society’s Facebook page from 9:30-10:30 a.m. the same day.
“These collective images promote the value, acceptance and inclusion of people with Down syndrome in a very visible way,” said the press release.
The couple’s prom was hosted by Best Buddies, a national organization that matches kids and adults with disabilities with high school and college students without disabilities. The pandemic-era dance gave Connor, now a Yorktown High School graduate, and Buzby, a senior at Washington-Liberty High School, a chance to see each other during the lockdown.
“It was fun. We danced,” said Connor, who then showed off some of his signature moves.
For Connor, being on the Jumbotron means demonstrating that he is a capable adult. This year, he started the Program for Employment Preparedness at Arlington Career Center, which partners with employers and worksites to transition adults with differing abilities to life after school.
“I want people to know that I know stuff,” he said.
Suzanne said the program teaches him “how to ride the ART bus and the Metro and cook and balance a checkbook, which frankly more colleges ought to teach.”
The video and walk also preview Down syndrome Awareness Month in October, a month that Suzanne uses to highlight the challenges of living with or caring for someone with Down syndrome.
“I try to post things… that, if people knew, they could help with advocacy and make changes to the law that would make life easier for our kids,” Suzanne said.
She is watching some bills in Congress right now that could make it possible for people like Connor to earn more than a sub-minimum wage. Additionally, caps on income and assets for those with Down syndrome to access federal programs like Medicaid may disincentivize seeking higher-paying employment, she said.
October is also a time to humanize people with the condition.
“People think people with Down syndrome have X and Y characteristics and I don’t think that’s necessarily true,” she said.
Connor is a social media maven who enjoys exercising, especially kickboxing, saying he could protect Sarah in an altercation with his skills. But in a fight, Sarah would likely utilize her charm and humor.
“She’s cute, kind and funny and she makes jokes and dances with her dolls,” said Connor.
Twice a day, a group of adults with disabilities can be seen walking near Gilliam Place, an affordable housing building where they live.
On a Tuesday morning in May, they showed ARLnow their stomping grounds. A recent rain turned everything a bright green, and cicadas droned in the background.
This little community on Columbia Pike was the first to be established by the volunteer-run nonprofit Our Stomping Ground, which connects adults with intellectual and developmental disabilities to independent living opportunities and helps them build communities in Northern Virginia.
On the walk, resident Max Loftis, who has autism, said living at Gilliam Place is a great experience.
“I get a lot of opportunities to cook and I’ve made great meals,” he said. “I like the feeling of independence.”
In a different decade, Loftis could have been placed in a state-run institution where he may have been deprived of the ability to cook for himself.
The Commonwealth used to institutionalize people with disabilities across five state-run, hospital-like facilities that housed 6,000 people. According to some reports, residents lacked the autonomy to choose their meals or what to watch on television. In 2011, the DOJ concluded an investigation that found Virginia was one of five states denying residents their right — enshrined in the Americans with Disabilities Act — to community-based services in integrated settings.
The friends at Gilliam Place have an array of disabilities. Some cannot speak, or cannot control what they say, and will instead point to letters on a chart to communicate. One developed a tic disorder from a traumatic brain injury. But they all participate in activities with other building residents and members of the disability community, take on jobs, and live in apartments with a sibling, an aide or someone with a complementary disability.
“We have a long way to go, but this is what it should look like,” said Our Stomping Ground (OSG) Executive Director and Founder Paula Manion, who joined the friends that day.
OSG works with Arlington County and the state to identify people with intellectual and developmental disabilities who are ready to move into independent living. It also works with local affordable housing developers to find units that have been set aside for people with disabilities.
The nonprofit is building a similar community at Queens Court, a new affordable housing complex in Rosslyn. Later this year, The Waypoint at Fairlington in Alexandria will debut its community and two other buildings in Northern Virginia that are set to open in 2023.
“We’re serious about demonstrating that we’re about improving the lives of our kids and everyone in the building,” said Donna Budway, who organizes activities at the apartment building and with the larger disability community. “This is the most inclusive experience they’ve had in their lives — more than schools, preschool and church.”
Manion founded the nonprofit as City Center NOVA in 2019, one year after she and her husband began looking for a place their adult son could live independently. Despite having a full-time job, he did not make enough money to live on his own, and he could not drive. They modeled City Center on a community in Rockville, Maryland, and renamed the organization “Our Stomping Ground” last November.
Ben McGann, 25, was part of the first group to move into Gilliam Place in December 2019, after the apartment building opened in August. He has known fellow residents Emma Budway (Donna’s daughter) and Huan Vuong since Pre-K. Both he and Vuong have autism and are non-verbal, while Emma is an unreliable speaker, meaning what she says and what she actually would like to communicate are different.
When Ben aged out of school-provided services, his mother Bertra thought he would always live with her. After learning how to communicate with a letter board, however, Ben one day told his mother that he wanted to live on his own.
“We were floored,” Bertra said.
(Updated 12:20 a.m.) Before the coronavirus, Reade Bush’s son was a talkative child with autism and ADHD who loved school and his friends.
But the pandemic changed the world and in turn changed him. Without a routine and social opportunities, his son created an imaginary world “with 52 friends.” By summertime, he struggled to distinguish his real world from his imaginary one. He began hallucinating.
“On his ninth birthday, he asked me, ‘Daddy, can I die for my birthday?'” he recounted to some members of the U.S. House of Representatives’ Labor and Education Committee last Thursday. Encouraged by another APS parent, who had connections on Capitol Hill, Bush told members of the Early Childhood, Elementary and Secondary Education Subcommittee about the ways COVID-19 has impacted students with disabilities.
Public school systems are required by law to provide to students with disabilities the specialized instruction and therapeutic services they need to learn alongside their non-disabled peers where possible. Using his family’s story, Bush told the committee that virtual instruction has made it almost impossible to meet that charge.
Arlington Public Schools, which shut down in March 2020, started the 2020-21 school year with four days of distance learning and one planning day. By November, some students with disabilities could return for in-person learning supports. Since mid-March, students across all grade levels have trickled back for two days of in-person instruction.
This fall, 95% of students will be enrolled for five days a week of in-person instruction, something administrators have repeatedly told families and School Board members that they will deliver. But Bush said his son and and his daughter, who has cerebral palsy, have regressed academically and socially and should have been given in-person instruction sooner.
Over the last year, many parents have recounted stories of their children losing their love of learning. But for Bush, his son lost more than that — he lost sleep, social skills and his grip on reality.
“We feel like we have lost our son,” he tells ARLnow.
Bush and his wife recorded and sent to administrators videos of their son and their daughter struggle to engage with their teachers. He praised his kids’ teachers, therapists and school building-level administrators for “trying to make lemonade from lemons” but Bush had to work nights and his wife had to quit her job to support their children from home.
The parents aimed to get students with disabilities face-to-face with teachers and peers. Bush advocated for this during meetings with teachers and administrators, School Board office hours and Arlington Special Education Advisory Committee meetings.
“We were told, ‘There’s nothing we can do,'” he said.
Meanwhile, his son’s condition worsened, landing him in Children’s National Hospital for four days. After running numerous tests, doctors concluded the child’s autism had worsened due to social isolation.
Doctors prescribed four medications, but said “what he needed most was to return to full-time, in-person learning so that he could begin to solidify his identity with real, in-person teachers and peers,” Bush told the subcommittee.
Bush told ARLnow that three doctors wrote to administrators asking for his son to be placed in an in-person private special-education school. (When local public schools cannot meet children’s needs, it can use state funds to place them in a specialized school).
He said administrators denied his multiple requests in part because his son would only be socializing with students with disabilities. Where possible, another federal statute requires schools to place disabled students with non-disabled peers.
His son instead learned from an iPad in a classroom alone, save for a staff member who helped him, he said.
“In November, we brought in our most vulnerable students with disabilities population to immediately help provide support to access virtual instruction and as soon as we could staff it and tried to provide in-person instruction to the extent possible,” APS spokesman Frank Bellavia told ARLnow this morning. “While some support was provided by special education assistants and Extended day staff, we worked hard to provide training to the staff that supported [these students].”
More Accessible Parking in Busy Areas — “The County has installed an additional 60 ADA-accessible on-street parking spaces for a total of 212. The spaces — located throughout eight areas of high residential and business density — feature meters with near field communication (NFC), allowing customers to pay by waving a smartphone within a short distance. The adjusted parking areas also allows for easier access to popular areas throughout the County.” [Arlington County]
Ballston Cafe Serves Kids for Free — “When local schools closed in March — and their cafeterias along with them — Good Company Doughnuts & Cafe began offering free weekday lunches to school-age kids on a walk-in basis. As of late July, the restaurant had provided nearly 3,000 such meals.” [Arlington Magazine]
Yglesias on Arlington Housing — “How much study do you need to know that houses are expensive in Arlington and most of the country is zoned to make adding units illegal?” [@mattyglasias/Twitter]
I-66 Lane Closures This Weekend — “Single-lane closures on eastbound I-66 just before the bridge over Lee Highway (Route 29) at Exit 72 will occur (weather permitting) between 9 p.m. Friday, Aug. 21 and 5 a.m. Monday, Aug. 24 for road repairs.” [VDOT]
Reminder: Ballston Taco Bamba Opening — “The new 1,500 square foot restaurant is the fifth Taco Bamba in Virginia. Set to open on Thursday, Aug. 20, the takeout taqueria will feature ‘a bar program, a small patio and a brand-new menu of nuestros tacos, in addition to the taqueria’s traditional favorites.'” [ARLnow]
Flickr pool photo by Vincent
Transit Union Gets Its Money Back from Dorsey — “Union verifies (to me, 5 minutes ago) that it has received [embattled County Board member Christian Dorsey’s] repayment of $10,000 campaign donation.” [Twitter]
Board Advances Reeves Farmhouse Plan — “The [Reeves] farmhouse will be preserved and protected as a historic site, the parkland around the house will stay as parkland, and the County will get much needed housing for people with developmental disabilities without our taxpayers footing the bill. It’s a win-win-win.” [Arlington County]
Va. Legislature OKs Amazon Delivery Bots — “Amazon.com Inc. package delivery robots could soon hit Virginia’s sidewalks and roadways. The General Assembly has made quick work of a bill that would clear the way for Scout, Amazon’s six-wheeled delivery robot, to operate in the commonwealth.” [Washington Business Journal]
Airport Helper Service to Launch Tomorrow — “Goodbye, airport chaos… SkySquad is launching this week at Reagan Airport to improve the airport experience for anyone who needs an extra hand. Travel is stressful for most people, especially families with young kids; and senior citizens who need extra support.” [Press Release]
A Look at Arlington’s Oldest Families — A series of articles profiling long-time local families takes a look at the Parks, the Shreves, the Smiths, the Syphaxes, the Birches and the Thomases. [Arlington Magazine]
Sheriff’s Office Welcomes New K-9 — “The Arlington County Sheriff’s Office recently welcomed its newest K-9 officer – Logan, a one-and-a-half-year-old black Labrador retriever who is paired with handler Cpl. Matthew Camardi. The duo will work in narcotics detection and other specialized fields. [InsideNova]
Over the past two decades, parents say Arlington has become known as one of the best places in the country to raise a child with Down Syndrome.
Three local families with children with Down Syndrome told ARLnow that the county is renown for investing in resources, and its proximity to D.C. means parents are often uniquely suited to lobby for legislative fixes.
A “Tight-Knit” Community
Tom and Kay Tiernan have 20-year-old triplets named Jon, Liz, and Anna. Their daughter Anna was born with Down Syndrome and currently attends the county’s Arlington Career Center, which prepares her for the working world.
Anna plays in the Arlington Little League games for those with disabilities, which Kay says serves as an opportunity for parents to sit in the bleachers and swap stories about their children’s school experiences.
“Because Arlington is so small and with three high schools you can really connect and share what’s going on one act other’s back yard,” she said.
“A lot of it is knowing what’s out there that’s available to you,” said Rick Hodges, who is a father to 13-year-old Brita and 18-year-old Audrey — who also has Down Syndrome. “If you don’t know that there’s a resource then you don’t look for it, you can’t use it.
Hodges, who works as a journalist, said the “tight-knit” group of families with Down Syndrome children in Arlington helped clue him into resources like Early Intervention when Audrey was a baby, and the Department of Parks and Recreation’s therapeutic recreation activities when she was older.
Suzanne Garwood has two children with Down Syndrome — Connor, 16, and Sloane, who is 14, nonverbal and was recently featured in an advocacy video in New York City. She said there was once an opportunity in her work to move her family to Plano, Texas but she never considered it because she feared the social services wouldn’t be as strong as they are in Arlington.
“I would absolutely never leave the D.C. area,” she said. “I do think it’s unique.”
Although research has found disparities in life expectancies for people with Down Syndrome depending on their race, the genetic disorder itself affects all races equally and is caused by an extra copy of a chromosome in their cells.
“It’s a random genetic issue so you end up meeting all kinds of different people that you might not otherwise meet,” said Hodges of the community parents have formed.
Arlington’s community may be unique because of its proliferation of lawyers, journalists, and other high-powered professionals who fight for change.
“Maybe we are a little more aware of how to advocate for our kids and also our community very passionate anyway,” said Garwood, who is an attorney. “You have to be because a lot of times our kids don’t have voices for themselves, so they need us to do advocacy for them.”
One of the issues parents worry about is the housing shortage for people with disabilities, a problem exacerbated by Arlington’s overall shortage of overall affordable housing. The Medicaid program allows people with disabilities who turn 22 to receive housing vouchers, but Anna Tiernan’s parents say there’s no telling what position she is on the government waitlist.
“We don’t know if she’s 10th in line or 110th in line,” said Kay Tiernan, who works as a project manager for a tech company.
“Once you pass 21 it’s known as ‘the cliff’,” added Tim Tiernan.
“I do worry what it’s going to be like when they age out of school, and it seems it’s coming around the corner,” added Garwood.
All the parents who spoke with ARLnow said they hope banding together with disability advocacy organizations like The Arc of Northern Virginia and the National Down Syndrome Society, as well as volunteering on local government organizations like the Community Services Board, can help fix the problem.
“A few dads from Northern Virginia”
Rick Hodges did exactly that several years ago when he and other local parents pushed for what came to be called the Achieving a Better Life Experience (ABLE) Act.
The bill allows a disabled person to keep a savings account of up to $100,000 without jeopardizing their federal benefits, and was signed into law after Hodges says Northern Virginia parents leveraged their background as Capitol Hill staff and lobbyists to marshal bipartisan support.
The idea itself came from a seminar Hodges went to at Arlington Central Library about how to save up a college fund.
“They were talking about these things you can do to save and I realized that she might not go to college, I don’t know yet,” he said. “These systems for saving are based on a typical life. But Audrey may not have this kind of life, and it would ruin her government benefits.”