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.”
(Updated at 2:30 p.m.) A regional nonprofit for people with disabilities is hosting an accessible Halloween event for families this weekend.
The Arc of Northern Virginia is hosting its annual “Arctoberfest” this Saturday, October 26, with a range of activities including a haunted house, graveyard, a costume contest, and a DJ, designed for people with and without disabilities.
The event will run from 6-9 p.m. at The Knights of Columbus (5115 Little Falls Road.)
The indoor haunted house will be the event’s main attraction, with surprises hidden in the fog for the adventurous wanderer. The event’s organizers also wrote in a press release that people can tour an indoor graveyard to “raise your ‘spirits.'”
“New to Arctoberfest this year, the first hour of the event will be presented as ‘sensory-friendly’,” organizers also noted. “This will afford those for whom loud sounds, flashing lights, and other high-stimulus elements are a concern with the opportunity to participate.”
The Falls Church-based advocacy organization operates across Northern Virginia and has long pushed officials to address the high unemployment rates facing people with disabilities, among other issues.
Arctoberfest will also include a prize-filled costume contest, a photo booth, as well as snacks and a cash bar with alcoholic drinks for drinks with an “Arctoberfest Punch” for underage attendees.
Tickets cost $25 per person and can be purchased online.
An Arlington teenager has been selected to be featured in a video about Down syndrome, which will be shown in New York City’s Times Square.
Suzanne Garwood says her 14-year-old daughter Sloane was among the 500 chosen to be featured in the video by the National Down Syndrome Society (NDSS), out of 3,000 people who submitted photos nationwide.
Garwood has two children with Down syndrome, Connor, 16, who attends Yorktown High School, and Sloane, who attends the newly re-named Shriver Program. She said her desire for both of them to have the rights and opportunities of any other kid led to her involvement with a local chapter of NDSS.
“I think that they’re making a real impact on Capitol Hill,” she said of the organization. “There are a few bills that they’ve actually gotten passed in the past year. In the context of this environment is really, really impressive.”
NDSS has previously lobbied for a bill allowing people with disabilities to save money without losing Medicaid benefits. The bill ended up passing.
Sloane, who is nonverbal, wasn’t phased when she heard she was picked for the video.
“She was like, yeah whatever,” Garwood laughed, adding that her brother, who is verbal and enjoys social media, was more excited.
The video will air in Times Square on September 14, per the NDSS website.
(Updated at 3 p.m.) Arlington Transit’s phone system to connect disabled and elderly riders to bus service has been hobbled by technical problems all week, prompting big headaches for people who rely on the program.
ART’s “Specialized Transit for Arlington Residents” service, commonly known as STAR, has been dealing with “technical difficulties” at the agency’s call center since Tuesday (June 26), according to a series of alerts sent out to riders.
The main STAR phone line hasn’t worked since then and remains down today (Friday). County transportation spokesman Eric Balliet says ART is working on the issue with service provider Verizon and even the state’s technology agency, with a temporary solution on the way.
“The temporary solution, estimated to be in place later today, will forward the main STAR number to a number provided by Red Top Cab, which dispatches service for STAR,” Balliet wrote in an email. “STAR personnel have been taking calls on this temporary line and will continue until the issue is resolved.”
The phone system is designed to connect riders who might have trouble using ART’s regular service with a scheduled, shared-ride service to take them wherever they need to go around the county. Accordingly, this week’s outages have created big problems for riders with disabilities, in particular.
I have been trying to stay quiet, but I am close to reaching my breaking point. I am an Arlington resident who is #blind, and my county is failing me.
— Tiffany Jolliff (@TiffanyJolliff) June 29, 2018
Since last week, STAR, Arlington county's #paratransit system has been inaccessible to customers. The phones are down, meaning that no trips can be scheduled. This places an undue burden on people trying to access employment, healthcare and recreation in the DMV.
— Tiffany Jolliff (@TiffanyJolliff) June 29, 2018
The worst part is, STAR customers have not received any communication from Arlington about what is happening, or when a resolution will be in place.
— Tiffany Jolliff (@TiffanyJolliff) June 29, 2018
Photo via Facebook
As plans for a new building for the H-B Woodlawn Secondary Program move forward, members of the Arlington Special Education Advisory Committee (ASEAC) say the design is not inclusive enough for students with disabilities.
In emails sent to the Arlington School Board, ASEAC and other groups expressed concern about a separate entrance intended for disabled students in the Stratford Program.
“The current design still appears to envision Stratford students entering the school through a separate door on the ground level of the building’s northwestern corner, next to the Stratford offices, with the main entrance being at the center of the building one level up, next to the H-B Woodlawn offices,” said a Jan. 14 email from a coalition of individuals and groups, including the Arlington Inclusion Task Force.
“Designing a building that has a separate entrance for students with significant disabilities reinforces the idea that students with disabilities are inferior, second-class citizens to be kept out of sight and out of mind,” the email continued. “Separate entrances emphasize difference, encourage isolation, and erect barriers, rather than fostering connections and providing opportunities for engagement. Separate entrances are an affront to Arlington’s inclusive values.”
The School Board responded in another email that all three entrances to the building will be accessible to all students.
The new facility, which will replace and demolish the Wilson School property in Rosslyn, has an estimated cost of around $100 million and is expected to be complete in time for the 2019-2020 school year.
ASEAC also criticized what it said was a lack of communication with community members during the design process.
“Feedback from parents, the Inclusion Task Force, and this committee appears to have had little, if any, impact on the final design. Concerns were raised and provided in writing to the School Board and APS staff in October 2015, allowing reasonable opportunity for these concerns to be accommodated,” ASEAC members wrote.
Universal Design principles, as defined by the Disability Act of 2005, were not applied to the new building and should not fall on the responsibility of parents to uphold, ASEAC said. Members called for the school to consider making the best of inclusive spaces such as the cafeteria, library and other common spaces.
In a letter, School Board Chair Barbara Kanninen said Universal Design was included throughout the design process and feedback from parents, administrators and faculty were considered throughout as well.
“We wish to confirm that design and operation of the new school on the Wilson will comply with the principles of Universal Design and inclusion and that students in the Stratford, ESOL HILT, Asperger’s and H-B Woodlawn programs will not be segregated from one another,” the School Board responded.
The full response to ASEAC, after the jump.
The Institute for Multi-Sensory Education’s Orton-Gillingham approach trains teachers to have students learn language by listening, speaking, reading and writing. So, for example, a dyslexic student is taught to see the letter A, say it and write it in the air at the same time.
Students are also taught to read and write various sounds in isolation before making them into words, and learn the history of the English language to understand its rules and patterns.
An APS spokesman said training is part of a concerted effort for teachers to support dyslexic students and help them get their reading and writing abilities up to a good standard.
“A few years ago, APS began training teachers to be able to support students with Dyslexia in their classroom,” the spokesman said. “The decision was based on research through the International Dyslexia Association on the best instructional practices for students with dyslexia. APS continues to have a focus on literacy for all of our students and making sure our teachers have the training, tools and resources to meet the needs of all of their learners.”
APS teachers are given awareness training on dyslexia through a 10-minute overview video, handouts with characteristics of dyslexia and training for school psychologists and special education coordinators to help them determine if a student is dyslexic and help parents understand how to help.
According to testimonies provided by IMSE, the use of the Orton-Gillingham approach is paying dividends.
“A student with an Individualized Education Program who came from kindergarten not knowing letters and letter sounds, with significant deficits in memory and attention, after a year with IMSE’s [Orton-Gillingham approach] now has consistent memory of their letter and letter sounds,” one APS first-grade teacher said in a statement. “The sentence dictation has resulted in growth of concept of word as evidenced by spelling, word space and sentence structure.”
The APS spokesman said the Orton-Gillingham approach is just one way the school system helps students with dyslexia. APS paid a discounted rate of $800 per teacher for the training.
“We have trained teachers from all of our schools in not only Orton Gillingham but other structured literacy approaches that provide systematic, explicit and multi-sensory instruction for students who have Dyslexia,” the spokesman said. “Our goal is to build capacity with all of our teachers to know about Dyslexia and then build capacity within each team to be able to offer a variety of interventions and supports for all of our students.”
(Updated 12 p.m.) As elementary school students, blind triplets Leo, Nick and Steven Cantos were bullied, had few friends and no role models.
But that changed when, at the age of 10, blind attorney and Crystal City resident Ollie Cantos became their mentor after learning about them through a friend at church. He legally adopted them two years ago, and turned their lives around.
“I didn’t have friends, my brothers were the only people, that was it,” Nick Cantos said. “I was essentially shut in for seven years, and I was a violent kid. I got into fights with people, because I was being bullied in school. It ended up getting so bad that I wanted to end [my life]. Dad really saved my life.”
A ceremony on Wednesday night marked how far they have come, having also graduated from Wakefield High School earlier this year. At The Church of Jesus Christ of Latter-day Saints in Alexandria, the brothers became the first ever blind triplets to be honored as Eagle Scouts in the history of Boy Scouts of America.
To become Eagle Scouts, the highest honor in scouting, candidates must complete a slew of assignments, including tasks like first aid, knot-tying, leadership and orientation. It also requires community service, and six months or more spent in leadership positions at their troop.
Each also had to lead a community service project. Steven Cantos collected school supplies for low-income schoolchildren for nonprofit Aspire! Afterschool. He already volunteered with the organization, which helps children improve their reading, and had intended to collect enough supplies for 90 students.
When the supply drive was over, he had collected enough for 130 students.
“They go in and help kids read in a more advanced way, since they feel that reading is the first thing that kids need to learn, and then they learn other things if they can read better,” Steven Cantos said. “The project stemmed from the fact that I’d already volunteered a bit of time to them, so I wanted to give some more time… I decided that education is important, so let’s give them school supplies.”
Leo Cantos collected blood and blankets for INOVA Fairfax Hospital, a children’s hospital where he spent a month re-learning how to walk. He finished with 88 units of blood and 77 blankets, all donated by local people he had recruited.
“I wanted to give back to the kids, because I saw the kids there and I saw how they were not doing too well,” Leo Cantos said. “I wanted to give them a better experience, kind of like the one I had in the hospital but extended to them as well.”
And Nick Cantos collected donations of hygiene supplies for nonprofit Doorways for Women and Families, which helps people out of homelessness and away from domestic violence and sexual assault. He collected about $2,000 worth of supplies to donate to the organization.
“It took a lot of planning, it took a lot of work and papers,” Nick Cantos said. “The craziest part was seeing all my scout friends and leaders and brothers helping me to do this, and me managing this thing.”