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.”
STAR, Arlington’s bus service for disabled residents, will move to a new call center on Columbia Pike after County Board approval of the plan at its meeting Saturday.
Specialized Transit for Arlington Residents will move to 2301 Columbia Pike, Suite 120, near Penrose Square, after the Board agreed to rent the property from the landlord.
STAR’s existing call center is located at 2300 9th Street S. in the same neighborhood. Its lease on the property expired on June 30, and while it can be renewed on a monthly basis, the landlord plans to redevelop the office building and no longer wanted a long-term tenant.
In a report on the project, county staff noted various positives for the move.
“It is accessible and near a major transit stop with weekend service,” staff wrote. “Because it has its own separately-powered HVAC system, the call center can operate on weekends without incurring the cost of heating and cooling the entire floor. This will yield significant savings for the County in comparison with conventional office space.”
STAR is a paratransit branch of the ART bus system and provides transportation options to the disabled and handicapped who are unable to use public transportation. Those who ride with STAR call ahead to make reservations to be picked up from their home. STAR then routes the ride to pick up other residents who use the system along the way.
The Board will rent 2,337 square foot property for an initial period of 10.5 years (126 months), with a base rent of $4,944.70 per month. That rent will be free for the first six months. Staff estimate it will take three months for the office to be built out and readied to be the call center, during which time STAR will stay in its current location.
The total cost of construction for the new property is estimated at $300,000, part of which will be paid for by the landlord.
(Updated at 11:15 a.m.) A co-op child care center for Arlington Public School employees has plans to move to a new space in Ballston, possibly splitting it up from a special needs program it has long integrated with.
The Children’s School’s board of directors this week signed a letter of intent to relocate its program to 4420 N. Fairfax Drive for the 2017-2018 school year.
The relocation could separate the center from the Integration Station, a program for Pre-K children with disabilities that allows them to interact with The Children’s School students. Both the daycare and the special needs program have worked together at the Reed School building in Westover for more than 20 years.
The move comes months after a plan from APS Superintendent Dr. Patrick Murphy to create a new 725-seat elementary school at the site of the Reed School building. Under the proposal, both The Children’s School and the Integration Station would likely have been displaced from their current home.
“APS has consistently informed TCS that they do not have any space and are running a deficit,” TCS board member Alec Strong said in a statement. “Our ultimate goal remains keeping TCS and Integration Station together, but we need APS’s help.”
The prospect of separating the daycare and integration program has worried many parents whose kids are enrolled in them. A group of parents and supporters of the programs spoke out against the plan during a School Board meeting earlier this month.
“As a mother of a student in Integration Station, the culture of Reed is one of safety, love and value to the special needs community, and that is something you just don’t find in a lot of places,” said one parent at that meeting. “Splitting it up would be devastating, both to the teachers, their children, and the special needs community.”
In a statement given to ARLnow.com on Feb. 3, APS said the decision regarding the future of TCS and the Integration Station is a tough one to make.
“While APS will continue to explore options as we move through this process, we cannot guarantee that we will be successful with any of the available space options,” the statement reads. “APS is committed, however, to continuing to provide support for students in the Integration Station program either as a partner with The Children’s School, or integrated into existing APS programs.”
Read a release from TCS about the move below:
The Children’s School Board of Directors signed a letter of intent yesterday to relocate its program to a new location in Arlington for the 2017-2018 school year. This follows confirmation at a School Board meeting two weeks ago that Arlington Public Schools does not have any space during planned renovations of the Reed School for the non-profit program, which has served pre-school aged children of APS teachers since 1987, and special needs students in the Integration Station program for more than 20 years.
In a statement to ARLnow.com, APS said: “While APS will continue to explore options as we move through this process, we cannot guarantee that we will be successful with any of the available space options. APS is committed, however, to continuing to provide support for students in the Integration Station program either as a partner with The Children’s School, or integrated into existing APS programs.”
The TCS Board of Directors maintains that APS has never offered any space or location to TCS. “APS has consistently informed TCS that they do not have any space and are running a deficit. Our ultimate goal remains keeping TCS & Integration Station together, but we need APS’s help,” said TCS Board Member Alec Strong.
In a January 30, 2017 letter to concerned Integration Station parents, many of who spoke at the School Board meeting in support of the two programs remaining together, TCS Director Naseera Maqsood said:
“As of Friday, January 27, 2017, we were informed (by Assistant Superintendent Leslie Peterson) in very clear terms that we need to find a new location. We were informed that there is no space at the Madison Community Center (technically an Arlington County property) and that no Arlington Public School grounds have enough space for us to put relocatables (trailers). Arlington County has also indicated that there is no space for us to use relocatables.”
“We want desperately to keep all of our children together,” Maqsood added. “As educators, we are committed to having our students in integrated classrooms. We will ensure that any space we seek to lease or buy will have room for the Integration Station students. Ultimately though, the decision to keep our programs together is in the hands of Arlington Public Schools, not The Children’s School.”
“We continue to hope and work towards some miracle that will allow us to remain on APS or Arlington County grounds, and to continue providing more than 150 affordable childcare positions to Arlington teachers and parents,” Maqsood added. “We believe this aligns with our shared values, legacy and the desires of the Arlington County electorate.”
Fairfax Drive photo via Google Maps
A plan to build a new educational facility at the Reed School in Westover has some parents worried for the future of a daycare and special needs program there.
Last year, Arlington Public Schools Superintendent Dr. Patrick Murphy announced a renovation project to create a new 725-seat elementary school at the site of the Reed School building in Westover.
The Reed School building currently houses The Children’s School , a co-op child care center for APS employees, and the Integration Station, a program for Pre-K children with disabilities that allows them to interact with The Children’s School students. Both the daycare and the special needs program have worked together for more than 20 years.
But the longtime collaboration may soon come to an end. Under the proposal, The Children’s Center and the Integration Station could be moved out of the building and separated from one another. Arlington Public Schools hasn’t yet announced a home for either one.
The possibility of separating the daycare and integration program has worried some parents whose kids are enrolled in both. A group of parents and supporters of the programs spoke out against the plan during a School Board meeting Thursday evening.
“As a mother of a student in Integration Station, the culture of Reed is one of safety, love and value to the special needs community, and that is something you just don’t find in a lot of places,” said one parent. “Splitting it up would be devastating, both to the teachers, their children, and the special needs community.”
One parent fought back tears as she urged School Board to keep the two programs under the same roof. She described how her son, who is autistic, benefitted from the Integration Station.
“Had he not received the level of special integration care from the staff, I’m sure he would not be where he is right now, which is attending a typical school surrounded by typical kids,” the parent said.
She continued: “Without TCS, the Integration Station is no longer possible and much of its value is lost… We ask that the board take concrete steps toward ensuring that the children’s school can continue to serve both the staff and the students of the Integration Station.”
— Sara Shaw (@SaraShaw7) February 3, 2017
In a statement given to ARLnow.com, APS said the decision regarding the future of TCS and the Integration Station is a tough one to make.
Everyone in Arlington knows that APS is facing a period of unprecedented enrollment growth that is creating significant demands on school capacity. Providing seats for the growing number of students in APS has stretched the capacity of our schools and our school sites. APS is working closely with the County and The Children’s School to explore viable options for relocation. To date, TCS wants to continue to pursue additional options beyond those that have been identified.
While APS will continue to explore options as we move through this process, we cannot guarantee that we will be successful with any of the available space options. APS is committed, however, to continuing to provide support for students in the Integration Station program either as a partner with The Children’s School, or integrated into existing APS programs.
Arlington Golfer Competing for Amateur Title — Psychotherapist Matthew Sughrue, an Arlington resident, has advanced to the championship match of the U.S. Senior Amateur golf tournament. Sughrue, 57, will face 62-year-old Dave Ryan, of Illinois, in a final round today. [ESPN, USGA]
Local Photographer Has Overcome Many Obstacles — Susan Bainbridge, a freelance news photographer and journalist, has a remarkable story of overcoming obstacles. Bainbridge, who also co-founded Arlington County Crime Solvers, has battled disabilities and a series of debilitating accidents from birth into adulthood. Since 2011 Bainbridge has served as an usher during Sunday evening mass at the Cathedral of St. Thomas More, even working through a torn knee ligament and a hip injury from a fall last year. [Catholic Herald]
Letter to the Editor: We Should Welcome Refugees — The closer-in suburbs of Northern Virginia, including Arlington, should be welcoming more refugees, say the writers of a letter to the editor of the Sun Gazette. In Virginia, refugees have largely been placed downstate and in outer suburbs. “They are not threats,” the letter says, addressing the fears some have of refugees. “They are the new Americans.” [InsideNova]