Gainesville Lifestyle Magazine April 2019 by Warrenton Lifestyle Magazine

APRIL 2019

SPECIAL NEEDS AWARENESS & RESOURCES ISSUE • YES! THOSE WITH SPECIAL NEEDS CAN SUCCEED IN COLLEGE • THROUGH THEIR EYES: FACING AUTISM WITH HOPE AND STRENGTH • THE ARC OF GREATER PRINCE WILLIAM: DOING IT ALL FOR THOSE WITH SPECIAL NEEDS

also inside:

Our first-ever disAbility Resources Guide

Alex Luna Scoring big in school and as manager of NVCC’s hockey team

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PUBLISHER Dennis Brack dennis@piedmontpub.com

EDITOR Susan McCorkindale susan@piedmontpub.com

ART DIRECTOR Kara Thorpe kara@piedmontpub.com

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o you love someone with autism? I do. My 27-year-old son, Casey, has high functioning autism and it’s because of him that I’m passionate about helping individuals with autism and the families who love them get the supports they need to lead full lives. Of course, part of getting that support is knowing where to turn, and that’s where this special issue comes in. Smack in the middle of the magazine you’ll find our first-ever disAbility Resources Guide. Created by both the Arc of Greater Prince William and the Arc of North Central Virginia, this incredible tool bursts with information on advocacy organizations, community supports, recreation options, transition services, and more. How I wish I’d had such a guide when my son was growing up! Beyond the Guide you’ll find profiles of families whose strength and determination to care for their kids will touch your heart, interviews with special needs students who are redefining what it means to be a college coed, a look at the healing power pets can bring to an autistic individual’s life, and a clear and concise explanation of Virginia’s waiver system. Many thanks to Lucy Beadnell at the Arc of Northern Virginia for her assistance with that feature. My deepest thanks to Marilyn McCombe, Executive Director of the Arc of North Central Virginia, and Karen Smith, Executive Director of the Arc of Greater Prince William for undertaking the mammoth task of creating the Guide, to all those who contributed to this issue including Frannie Barnes, Christine Craddock, Robin Earl, Pam Kamphuis, and Kara Thorpe, to all those who shared their stories with us, and to the advertisers that grace these pages. Thanks also to Dennis Brack and Bruce Potter for their support. And last, but never least, to my son, Casey, for giving me my purpose. I love you.

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ON THE WEB www.PiedmontLifestyle.com Facebook: @PiedmontLifestylePublications Email Newsletter: Sign up at www.PiedmontLifestyle.com The Gainesville Lifestyle Magazine is published monthly and distributed to over 8,000 selected addresses. While reasonable care is taken with all material submitted to The Gainesville Lifestyle Magazine, the publisher cannot accept responsibility for loss or damage to any such material. Opinions expressed in articles are strictly those of the authors. While ensuring that all published information is accurate, the publisher cannot be held responsible for any mistakes or omissions. Reproduction in whole or part of any of the text, illustration or photograph is strictly forbidden. ©2019 Rappahannock Media LLC.

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GAINESVILLE LIFESTYLE

SUSAN McCORKINDALE

EDITOR

P.S. How packed is the disAbility Resources Guide? So packed we couldn’t fit it all here. But don’t worry, the entire thing is available online at PiedmontLifestyle.com. Simply click on “More.”

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contents 06 Through Their Eyes:

Stories of local families facing autism with hope and strength

Navigating the Virginia Waiver System Q&A with Lucy Beadnell, The Arc of Northern Virginia

College Success Stories BY ROBIN EARL

Can a Dog Enhance the Life of a Special Needs Child?

The Arc of Greater Prince William – Doing it all for the developmentally disabled one person at a time

The answer is a definite “maybe.” BY KAREN PEAK

BY ROBIN EARL

ON THE COVER: Alex Luna photographed by Kara Thorpe exclusively for Gainesville Lifestyle Magazine.

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special needs awareness & resources issue

Through Their Eyes

Stories of local families facing autism with hope and strength

Zachary Dewhurst taught himself to play the piano at the age of three.

Show Me Your Happy Face STORY BY CHRISTINE CRADDOCK PHOTOS COURTESY DEZIRA DEWHURST

“My heart hurts for them,” Dezira Dewhurst says of families whose children have been recently diagnosed with autism. When her son Zachary was diagnosed at age three, the Bristow mom says her initial reaction was complete devastation. The feeling lasted a day before she sprang into action. She started searching for a therapy that would be best for Zachary and discovered Applied Behavioral Analysis (ABA). It was when she saw how her son responded to it that changed everything and gave her the sense that “it’s going to be ok.” Dewhurst went back to school to learn how to provide ABA therapy, and for the last

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GAINESVILLE LIFESTYLE

17 years has been helping other families find their way through this difficult diagnosis. Research states that less than ten percent of autistic children go on to live independently. But there are so many ways this statistic can be altered. “Early intervention is key,” Dewhurst says. In some counties, like Prince William, autistic children are provided services two days a week initially, and then more frequently as they get older. This, though, is the opposite of what the research says they need, she explains.

}

Thanks to his mother’s love and advocacy, today Zachary is a master at completing puzzles, and his room is decorated with framed 1000-piece Disney Pixar puzzles he finished in two days. He’s also an electronics and tech whiz with a wonderful affinity for music; he taught himself to play the piano at the age of three. “He will listen to and play anything from Jesus Loves Me to Enter Sandman,” Dewhurst said. “He likes to record himself playing the piano and singing his favorite songs

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God’s life. In summary, the judicial aspect of God’s salvation is according to His righteousness (Rom. 1:17a; 3:21-26; 9:30-31), is accomplished by the death of Christ (5:10), and is for sinners to be forgiven before God (4:7; Luke 24:47), washed (Heb. 1:3), justified (Rom. 3:24-25), reconciled to God (5:10-11), and sanctified unto God positionally (1 Cor. 1:2; Heb. 13:12), thereby entering into the grace of God for the accomplishment of the purpose of God’s organic salvation. Therefore, according to Paul, judicial redemption is the basis for a “much more” salvation which is an organic salvation to be saved in His life. To be saved in Christ’s life is to be saved in Christ Himself as life. He dwells in us, and we are organically one with Him. By the growth of His life in us, we will enjoy His full salvation to the uttermost—saving our entire being (spirit, soul, and body) by life. This organic salvation begins with the regeneration of our spirit (Titus 3:5) making or spirit life itself (Rom. 8:6, 10), and continues with dispositional sanctification as the holding line (1 Thes. 5:23; Rom. 6:19, 22; 15:16) to not only change or position before God but to sanctify our inner disposition by partaking of God’s divine nature (2 Peter 1:4). This “much more” salvation is based on the renewing of our mind with the new element of God’s life (Rom. 12:2) thereby giving life to our mind (Rom 6:8) that we may have the mind of Christ (Phil. 2:5). Based on the renewing of the mind, life transforms our soul into the same image of Christ and from glory to glory by beholding and reflecting the Spirit of the Lord (Rom. 12:2; 2 Cor. 3:18), thereby conforming us to the image of the Firstborn Son of God (Rom. 8:29). The final stage of God’s organic salvation is glorification (v. 30), the step in God’s complete salvation in which He will completely saturate us with the glory of His life and nature. In this way He gives life to and will ultimately transfigure even our mortal body (Rom 8:11), conforming it to the resurrected, glorious body of His Son (Phil. 3:21). This is to be saved to the uttermost (c.f. Rom. 5:10; Heb. 7:25)! While being reconciled to God through Christ’s death is an accomplished matter, being saved in His life from so many negative things unto glorification is a daily, continuous matter spanning the entire Christian life. Through this wonderful organic process, we will eventually reach glorification. It is the ultimate step in God’s complete salvation, wherein God obtains a full expression, which will ultimately be manifested in the New Jerusalem in the coming age. The Lord Jesus told the righteous Jewish leader Nicodemus that he needed to be born of water and the Spirit (3:5). Here water signifies baptism for repentance, by which the negative things of the old creation are terminated (judicial redemption), and the Spirit signifies the germination of people as the new creation with the life of God (organic salvation). In order to receive judicial redemption, we need pray with a repenting heart, confessing Jesus as Lord with our mouth, and believing that God has raised Him from the dead (Rom. 10:9). We also need to be baptized (Mark 16:16). To enjoy organic salvation, we need to behold and reflect Him each day (2 Cor. 3:18), love God with our whole heart (Rom. 8:28), drink the milk of His word (1 Pet. 2:2), always rejoice (1 Thes. 5:16), unceasingly pray (v. 17), and in everything give thanks (v. 18) that we may grow unto God’s complete salvation! “Gleanings from the Bible” is a series of articles contributed by a local Christian home meeting group that loves the Lord Jesus, believes that the Bible is God’s Word, and cares for the oneness of the Body of Christ. For more information please visit our website at www.fromhouse2house.org or email us at info@fromhouse2house.org. This article is based on the Holy Bible Recovery Version and other publications of Living Stream Ministry.

One Mother’s Advice Dewhurst offers the following suggestions for parents of children who have been recently diagnosed: Find an Applied Behavioral Analysis (ABA) provider. Leap Ahead, a practice in Manassas where Dewhurst has worked since 2003, explains that ABA, the most widely used intervention to treat children with autism, focuses on treating behavioral difficulties and producing significant social improvement. Learn the laws of Individualized Education Programs in your state. In order to be your child’s best advocate, you must become versed in this language. Find a support group – in person and online. Chances are that if you have a specific question, another autism parent has experienced it and can provide advice. Discover your child’s strength and build on it. Most of these kids are underestimated, says Dewhurst, and ultimately, they need to learn a job. Ask the school to include classes that will benefit your child. Finding your child’s strengths and interests early could lead to something wonderful. Surround yourself with people who “get it,” people who love you and your child unconditionally.

{ APRIL 2019 |

and then watches himself over and over.” In addition to these activities, Zachary really enjoys playing for the Brentsville District High School Unified Basketball Team. When asked where she sees Zachary in the future, Dewhurst says “I see him with me for the rest of his life.” Her hope is that what she

and her family are doing for Zachary now will someday enable him to do something outside their home for a few hours a day. “If you’re lucky enough to meet my son,” Dewhurst says, “you’ll know he likes you if he says, ‘Show me your happy face,’ ‘Whistle for me,’ and ‘Take off your glasses I want to see your eyes.’”

Future YouTuber and Author STORY AND PHOTO BY CHRISTINE CRADDOCK

When Haymarket mom Kathy Gill noticed something “off” with her then nine-month-old son Brandon, she immediately had him tested for development delays. Nonverbal for the first two years of his life and diagnosed officially with autism when he was five, Gill believes the key to her son’s progress was early intervention via the special education Pre-K setting at Tyler Elementary. Now a fifth grader, Gill says Brandon’s IEP “has helped tremendously in regard to academics.” As with many individuals with autism, Brandon has difficulty with social interactions and completing simple tasks. But he also has a great sense of humor, dances in class, and, says his mom, “is a huge blessing to our family. He makes us laugh and keeps us on our toes but most of all, he’s a truly brilliant kid with a bright future ahead of him.” While I was talking with his mom, I got to meet Brandon. I thought you’d enjoy meeting him, too. Lifestyle: Brandon, what would you like others to know about autism? Brandon: Autism is tricky because I get triggered easily. When I am really hungry, I get hangry. I wish other kids would learn more about autism, maybe they would be nicer to me. L: What are your dreams for the future? B: I want to be an author and a famous YouTuber. I want to do 24-hour YouTube challenges and unlock my creative mind. L: What is your day-to day life like? B: I have a tough time completing work at school. I know the answers, but it is a challenge getting them from my brain down to the paper. I try to do my best, but

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I wish other kids “ would learn more about autism ” it doesn’t always go so well. I get bullied a lot and I do not have any friends. L: Where do you see yourself in five to ten years? B: I am working on a book series that I will have published one day. It is a series about a group of survivors living through the zombie apocalypse. When I’m 18 I would like to change my name to Henry Boris Singleton and publish my books under that name. L: Why Henry Boris Singleton? B: I want to change my name to Henry because it is not a popular name and it matches me. I like it because it is different, and I am different. L: What is your favorite subject? B: Reading because it helps me think of more ideas for writing my own books.

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“Step out of your comfort zone” BY HANNAH SAMLALL PHOTOS BY DOUG GRAHAM

“I see myself as differently abled, not disabled.” This is just one of the many sentiments Joanna Hughes shared with me on a cold and snowy Thursday in January, as we chatted in her cozy apartment in Warrenton. Childhood was difficult for Joanna, particularly since she wasn’t diagnosed with autism until she was in high school. “It took me a while to accept who I am,” she said. “It was a long, hard road. Being in public school was hard, too. I was bullied a lot.” Along with bullying came other day-to-day challenges. “A kid without autism can walk into a grocery store and it doesn’t bother them,” Joanna said. “For a person with autism, it hurts them. The lights, the people, the noises. I used to have meltdowns in stores because of that.” Fast-forward nine years since being diagnosed at age 16, Joanna has been working at Harris Teeter now for two years. “It’s a bit ironic,” she said. “I’m working at a grocery store where I used to have public meltdowns.” One of the recurring themes that came up over and over during our time together, was

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how important it is for people with autism to have a support system. Lucky for Joanna, she has always been surrounded by people who care for her deeply. “They were just there when I was at my lowest,” Joanna said. “They were a shoulder to lean on and someone to listen. Even one kind person can make a huge difference in someone’s life.” She went on to list the people in her life who have supported her – her family and her friends at school, among others. “Some people with autism don’t have that support. It makes me sad. We need the help.” She hasn’t always had the mentality that autism isn’t a disability, though. “It helps to have a person on the spectrum talking to you about it. A really good friend of mine helped me see the light in it,” Joanna said. “Discussing things with him really helped. I try to do the same thing for others now.” Of all the supports and resources we talked about, the Virginia Department for Aging and Rehabilitative Services was at the top of the list. “I’ve been with them for years,” Joanna said. “They’ve helped me a lot.” DARS was able to set Joanna up with a group that assisted her throughout the application and interview process for her current job. “They also come with you to your job until they think you’re ready,” Joanna said. Other resources Joanna recommends are Facebook groups, specifically for those with autism. “It really helps to have people to talk to that relate to your experience.” Other support resources we discussed were things like anti-bullying groups, specifically outside of the school system. “I know special education tried their best, though.”

It’s a bit “ironic, I’m

working at a grocery store where I used to have public meltdowns.

”

It would be remiss of me not to share Joanna’s passion for music. “You know, people with autism have their one obsession,” Joanna said. “Mine is singing. It’s a huge passion of mine.” She shared how much singing and music has helped her throughout her life. Growing up in the church choir, she went on to become the lead singer. In high school, her chorus teacher pushed her to go after what she wanted, which resulted in her singing “For Good” from the musical Wicked at her high school graduation. One day, her dream role is to play Elphaba. “I can relate to her,” Joanna said. “I was an outcast, I think different, and I feel different.” When I asked Joanna if there was one thing she wanted people to take away from this article she said, “I want people with autism to know you’re not alone. There are people that understand the struggle you’re going through. We’re all going out of our comfort zone to do our own thing in the world,” she said. “I’m going out of my comfort zone every day and you can, too.” ❖

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special needs awareness & resources issue

Yneeds es,canthose with special succeed in college

BELOW: Veronica Brown is enjoying every moment as a George Mason Patriot.

Veronica Brown: Thriving in College

Mason LIFE program introduces students with disabilities to university life STORY AND PHOTO BY ROBIN EARL

Veronica Brown of Delaplane is grateful “to finally have the chance to be a grownup.” At 22, the junior at George Mason University lives on campus, attends classes, has an exciting internship, and is having tons of fun as a Mason Patriot. She’s also learning to cook, budget her money and keep up with other tasks of “adulting.” Veronica has Down syndrome and a tertiary diagnosis of autism. When Veronica graduates from the Learning into Future Environments (LIFE) program at Mason, she will receive a certificate of completion in the areas of theater and music. She attends classes with her LIFE classmates, but is also enrolled in some traditional undergraduate courses, for which she’s accompanied by an aide. Her favorite classes are Greek history, American history, and the Renaissance. “I want to learn different perspectives,” she said. Veronica also has an internship in the nation’s capital. She and other LIFE students take the metro to work in government offices in D.C. where she scans papers, does data entry and other computer work, organizes bills and shreds papers. “I love it!” she said. LIFE LESSONS Veronica remembers that as a freshman, she was homesick and a little scared. She didn’t want to be away from her mother,

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Maite Dougherty. The semester was made even more difficult because of a troubling social dynamic. Dougherty explained, “One girl was very possessive of Veronica. It got so bad, she kept her from leaving her room. It went on for a few months before we got the whole picture, and I left it up to the program to sort out. They’re very well prepared. What it highlighted to us were some holes in Veronica’s education.

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She has since learned to stand up for herself.” She’s also developed some other important tools, too: The ability to invite someone to go to the cafeteria with her, for instance, and the confidence to start a conversation with someone new. Said Heidi Graff, director of Mason’s LIFE program, “Sometimes the process that allows students to gain life skills includes the opportunity to make mistakes and learn from them.” She

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remembers a student who forgot to check his bank account before going grocery shopping. When he swiped his card, he couldn’t pay for his groceries. Graff said, “The student was upset but he doesn’t forget to check his account anymore!” At one point, Dougherty said, “I was going on about academics and putting too much pressure on her. She pulled back, had some down time and put a little music back into her life.” A non-profit in Middleburg called A Place to Be has helped Veronica reduce her anxiety through music therapy. This dovetails nicely with the mental health supports the LIFE program provides. “Behavioral and mental health is a pillar of the LIFE program,” Graff said. “We provide extra foundational help in that area and promote healthy practices and strategies for all our students.” Dougherty said, “Everyone connected with Veronica’s education meets once a year to review all aspects campus life – academics, mental health integration; it’s called person-centered planning. And no decisions are made about the student’s education without the student present.” Graff emphasized, “I like to think of the process as a triangle. The student is at the top of the triangle. The student’s family is one corner of the base and Mason LIFE is the other corner of the base. We must listen to our Patriot. They are always at the top of the triangle.”

mom, had a great experience in the public schools; he obtained an Individualized Education Plan (IEP) early on and had an aide to help him every day. “It was a very smooth process for us. We never had turmoil. He had wonderful teachers and a wonderful support system.” After high school, Camden enrolled at Lord Fairfax Community College. After two years he transferred to George Mason University (GMU) in 2014. It was at a meeting with the Mason’s Office of Disability Services (ODS) that Donna and Campbell learned about the MASI program. She explained, “It’s a sub program of ODS. You have to apply and be accepted — and pay for it out of pocket.” Through the MASI program, Camden had learning strategists to help him stay organized, register for classes, and search for internships. “They checked in with him once a week and were accessible any time by email or phone.” The MASI program also provided peer mentor support, students who have some background in working with students with developmental disabilities, to help with nonacademic concerns — like socialization and having fun. Although Camden’s autism presents some obstacles, his mother describes him as “high-

Camden Mitchell Poised for the Next Step

George Mason’s MASI program provides support for students with autism STORY AND PHOTOS BY ROBIN EARL

Camden Mitchell’s mother, Donna, didn’t believe that her son would ever graduate from a four-year university. But in December, with the help of George Mason’s Autism Support Initiative (MASI), Camden earned a bachelor’s degree in government and national politics from the Schar School of Policy and Government. Camden’s professional resume states that he’s looking for a job in government. His mom thinks he’d be an asset working in a research or writing position. Camden smiled and said he’s looking for something with “low-stress and high wages.” Camden, 25, of Warrenton, graduated with an advanced studies diploma from Fauquier High School in 2012 and, according to his

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GAINESVILLE LIFESTYLE

ABOVE: Camden Mitchell, 25, shows off his vintage video game system collection. RIGHT: Donna and Camden are contemplating Camden’s next steps, now that he has his bachelor’s degree from George Mason University.

}

functioning.” He did well in his classes at GMU and graduated on the Dean’s List. His only academic accommodations included extra time for test taking and being able to take exams at the ODS office (a quieter environment). Camden has difficulty with social cues, though. He said, for instance, “I have trouble recognizing sarcasm.” During his time at GMU, Camden lived on campus. Like all college students, he had to navigate roommates who were sometimes noisy and failed to clean up after themselves. Recently he earned his driver’s license and, with the help of his father, George Mitchell and his stepmother, was able to buy a car. Since he’s been working since 2012 — he volunteered at a game store for a while and has worked at Dominoes and Ruby Tuesday’s — having his license and his own wheels will certainly help with the next step in his development: working with a transition coach with the Virginia Department of Rehabilitative Services (DARS). “He has been a DARS client for years,” said his mom. “They are going to help him with his job search.” He's also considering a master’s degree in political science. “A master’s gives you the chance for better jobs,” he said. In his spare time, Camden enjoys singing and collecting vintage video game systems, adding, “I don’t just collect them. I tend to play them too.” When asked what he’s thankful for, Camden said that he’s most thankful for his family. “I have a family that loves me so much and does their very best to help me whenever I need something.”

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{ APRIL 2019 |

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GAINESVILLE LIFESTYLE

}

Alex Luna Ready to Fly

STORY BY FRANNIE BARNES PHOTOS BY KARA THORPE

Beth Luna of Nokesville lovingly refers to her son Alex as a child of opposites. He didn’t speak until he was four. But when he did, he more than made up for lost time. He spoke three languages: English, Spanish, and his own special made up language, one whose words he often made his mom repeat, just to keep her on her toes. Smart kid. Alex has Asperger’s and today the freshman at Northern Virginia Community College drives himself to school and to his job at a coffee house in Manassas. He loves to travel and has an affinity for photography. In fact, he recently set up a new lens with the sole purpose of capturing the lunar eclipse. “I’ve always felt life is too slow for me,” Alex said. “Living in the suburbs and the country, people don’t walk fast enough; they move too slow. I like the fact pace of the city.” He likes it so much that his postcollege plans include living in Chicago and then New York and working in the financial industry. Clearly Alex craves stimulation and continues to live up to his mom’s “child (now man) of opposites” moniker.

THE POWER OF INDEPENDENCE Raising her children with a strong sense of independence has been a main tenet of parenting for Beth, and the reason Alex attended a Montessori school when the family lived in Tennessee. It was there that a teacher recommended he be evaluated. He was, and a second evaluation two years later confirmed the diagnosis. Although the Montessori approach is a natural fit to foster self-sufficiency, traditional therapies and support for Asperger’s weren’t available and Alex moved to a public school. Luckily, the school he attended had an autism specialist and one terrific additional benefit: Alex’s teacher had a son who was autistic, and she totally “got” Alex.

“Get the IEP, work with the teachers, don’t shy away from getting the proper tools to help your child.”

Childhood though, still had its challenges. Alex’s parents kept him mainstreamed in school, appropriately independent for his age, and involved in typical childhood activities, but they quickly learned that despite his interest in sports, team sports weren’t a good fit. Cheering and yelling didn’t mesh well with a child who was easily overstimulated and sensitive to loud noises. Alex’s hearing was so sensitive that sounds most consider to be background noise could be heard by him, causing distress. Work moved the family to northern Virginia in 2012, and Beth was hopeful she would find good resources here for Alex, then 11. While the schools had good teachers and offered support, specialists – even as far as D.C. and Baltimore – were lacking. It was then that Beth realized that if you have the correct diagnosis, you have the tools to get help for your child. “Get the IEP, work with the teachers,” Beth said. “Don’t shy away from getting the proper tools to help your child.” And when you need to, get creative. As mentioned earlier, Alex loves sports, but the associated noise doesn’t love him, so Beth and Alex came up with a plan to get him involved with his favorite sport, hockey. Beth called the hockey coach at Battlefield High School where Alex was a student. He was interviewed and got a job with the varsity team working in the penalty box, and then on the scoreboard. Now, as a student at NVCC, he works with the school’s nationally ranked hockey team, a gig he got by himself. Perhaps the best advice Beth offers is, “Don’t be afraid to teach your child to be independent early. As parents we tend to do everything. Teach your child to work toward being self-sufficient at a young age.” ❖

Alex and his family outside their Nokesville home.

{ APRIL 2019 |

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W The Arc of Greater Prince William Doing it All for the Developmentally Disabled One Person at a Time BY ROBIN EARL

{ APRIL 2019 |

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here do thousands of developmentally and intellectually disabled children and adults – and their families – find support in Prince William County? At the Arc of Greater Prince William. From childcare for special needs children, to helping students with autism transition from school to the workforce, to educating parents on how best to help their children, The Arc does it all, one person at a time. For The Arc’s 330 employees and more than 200 volunteers, the work is not just a job, it’s a calling. Chris Caseman, director of resource development, had a long career with Exxon Mobil, but said that it wasn’t until he retired that he finally found his true mission. “I had a prominent job, but there was not a single day I had an impact on the organization. Here, I have an impact every day.” The Arc of Greater Prince William provides a variety of services across the community and manages 31 facilities, including group homes, childcare centers, adult day programs and recreation facilities. The main headquarters is in Dale City; it includes a childcare center, an adult day program, recreation rooms, and education and administration space. Jan Russell, family support coordinator, has been with The Arc for 23 years. She said, “I had to go out on medical leave for about a month. When I left, Sammie, who is 3 or 4 years old, couldn’t walk. By the time I came back, she ran to me. That’s the kind of difference we can make.” Karen Smith has been executive director of The Arc of Greater Prince William for more than 50 years and, while she’s fought tooth and nail for folks with developmental disabilities the entire time, the work still touches her heart.

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{ APRIL 2019 |

GAINESVILLE LIFESTYLE

}

Child Care

“When our folks get sick and go to the hospital, a staff person goes with them. The nurses and doctors often don’t understand how to work with a person with disabilities, so we’re there for them. They can be fragile. When our people die, they die in the arms of our staff.” Caseman said that when Smith started, there were three employees and the budget was $26,000. Now the budget is $15 million. The money to support The Arc comes mostly from Medicaid. Smith explained, “When a family has an individual with significant needs, they go through their local Community Services Board to get on a waiting list for a Medicaid Waiver.” The waivers pay for residential services, adult day and vocational support, and transportation. Childcare doesn’t require a waiver. Smith said that currently there are 13,000 people waiting for waivers in Virginia. More than 3,100 are on the priority 1 waiting list (where there is immediate risk to the health or safety of the individual in need of care), but that “there is not enough funding.”

Two licensed developmental childcare facilities – the Muriel Humphrey Center at The Arc headquarters and the Robert Day Center in Old Town Manassas – offer warm, nurturing environments for children and young adults ages six months to 22 years with intellectual and developmental disabilities, including autism. Smith said, “The children we support are those with medical or behavioral needs that cannot be met in a community childcare center or with a sitter. We also serve those children over the age of 12, whereas most centers don’t.”

Vocational Services

The Arc also offers a chance for those with intellectual disabilities to find productive work. Spinaweb, a specialty shop in Occoquan, employs weavers who produce handwoven fabric that is made into clothing and placemats, said Smith. “We sell our products all over the U.S.” Another employment initiative, Little Creek Services, provides janitorial services at locations throughout the community. “No one makes less than minimum wage,” said Smith. She said that the goal of these programs is to integrate those with disabilities into the general population. “We want our folks to be treated with respect and to be as independent as possible, and it’s good for everyone to see people with disabilities contributing in the community.”

Independent Living

INSIGHT, Inc. the residential component of The Arc, offers adults with intellectual and developmental disabilities the opportunity to enjoy a level of independence in a variety of living situations. Community residences provide a family-like environment for adults to live together. Counselors assist residents with complex medical needs 24 hours a day/seven days a week, and help them develop new skills. Smith said, “Every group home has a different ‘flavor.’ We try to bring people together who like doing the same things.” Supported living offers a less structured environment for those capable of living semiindependently. Individuals live alone or with roommates in a house, condo or apartment. Smith said of the supported living groups, “They have jobs during the day; the staff helps with meal prep, banking and other tasks.”

{ APRIL 2019 |

GAINESVILLE LIFESTYLE

Recreation

ABOVE, TOP TO BOTTOM: Landry, age 2, shopping with The Arc staff at Wegmans. Damone enjoying the sights during a three-day conference in Norfolk with The Arc. Rob and Christine getting creative in a painting class at Muse, sponsored by The Arc.

}

The Arc hosts more than 140 recreational activities annually – dances, bowling nights, art classes, yoga, exercise and wellness instruction. Anyone in the community can attend, said Smith. “Our dances are unique. Everyone is on the dance floor the whole time. And if we say the music stops at 9:30, you’d better not turn it off at 9:28!” The Arc also sponsors a local International Lions Club for individuals with intellectual disabilities. Members meet at the

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Open Mic Gives Students in Transition a Voice

LEFT: Members of The Arc chapter of the Lion’s Club. ABOVE: Attendees enjoyed evenings around the fire and other activities at last summer’s camping trip.

Dale City Arc headquarters to plan various activities and fundraisers. “It’s a way for them to give back,” said Smith. “They organize food drives, collect eyeglasses; they are a very active Lions Club group. And they have some interaction with other local Lions Clubs.”

Transportation

Individuals attending adult day services are picked up and dropped off at their homes via the Arc’s fleet of 50 vehicles. Most are wheelchair accessible and all are driven by people trained to work with individuals with disabilities. “They are not just bus drivers. They have to be able to deal with someone having a seizure or a medical emergency.” Smith said, “There are pick up points in the community for anyone associated with our various recreation offerings.” Those who live in residential homes are provided transportation for day services or anything they are doing – from doctor visits to getting to work. For community activities, like weekly bowling, drivers pick up participants from the local high schools. Childcare transportation, while unavailable for pick up and drop off, is available for field trips.

{ APRIL 2019 |

Education

A big part of The Arc is helping parents and caregivers cope with the physical and emotional challenges of caring for an intellectually disabled person. Family support coordinator Jan Russell spends her days working with families who are sometimes overwhelmed by the responsibilities involved. In addition to working with families, Russell organizes frequent educational seminars that address practical questions such as how to navigate special education in the public school system and the ins and outs of special education law and advocacy.

Circle of Support

Every year since 1994 The Arc has hosted its Circle of Support Conference. “It was originally a conference for early intervention, and then we expanded to help families learn all the resources available in the community,” Russell said. Last year’s event featured dozens of workshops and drew 450 attendees. This year’s Conference will feature 50 workshops and is scheduled for Saturday, November 2 at Hylton High School. For information, call 703-670-4800 or visit arcgpw.org. ❖

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Every other month, The ARC of Greater Prince William sponsors an open mic night for students making the transition to adulthood. At the open mic in February, there were 20 such young people in attendance, most of whom are on the autism spectrum. Several were still in high school while others were relatively recent high school graduates. Because this group discussion was focused on the transition that students face after high school, Joy Ocetnik, director of recreation and training, and moderator for the evening, asked the group what they thought they’d like to do after school. She started with Alyssa and Amber, who are still in high school. “I’d like to live in a group home with other girls my age,” Alyssa said. “I’d like to one day get married and have a family. I plan on going to college.” Amber, who will graduate from Hylton High School in the spring, said, “I’m not ready to leave yet; I’ve made so many memories. It’s an emotional time for me. I’m excited to graduate. I’d like to go to college. I’m interested in childcare. Once I graduate I’ll be able to start a new chapter.” Ocetnik asked those who’ve already left high school if they had any advice for the younger ones in the group. Christine responded to Amber, saying, “Don’t be stressed about it. Be yourself. I’m here for you.” Danny offered, “Be aware that there are plenty of resources out there. You don’t have to do college on your own.” Jeffrey spoke with gravity, “Don’t rush into anything. Take your time. Figure out what you are interested in.” When Ocetnik asked participants to talk about what struggles they’ve faced since graduating high school, several expressed concern about their health. Christine said that she struggles with being overweight, “It’s hard to get the weight off.” The others agreed that this was difficult, but had some suggestions: join a gym; join the Special Olympics; try the ARC exercise class held on Thursday nights at Hylton High School; find a friend to exercise with. Rob said that while he is searching for a cure for his disability, he tries to keep in shape and says he does pull ups from his wheelchair. He grinned as he pushed up his sleeve to show off an impressive bicep muscle. The discussion turned to employment. Several of the students have jobs. Ben works at BJs; Jeffrey works in doggy daycare; Amber has a job at Food Lion; Danny works at Ace Hardware. Ocetnik said, “It’s important to get out in the community. If you can’t find a job right away, find a way to volunteer. It can help you develop skills… answering phones, using a copier. it’s important to get connected. The Special Olympics, church activities, these can all be good ways to get connected. Janelle volunteered here at ARC. I’m pretty sure she wants to have my job.” As the session was wrapping up, Ocetnik asked, “Does anyone else have any suggestions?” Matt, who had been quiet most of the evening, demurred, “I don’t have any advice for anyone. Honestly, I just came for the pizza.”

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special needs awareness & resources issue

Waivers are needed to receive services children with special needs may benefit from, such as speech therapy.

Navigating the Virginia Waiver System Q&A WITH LUCY BEADNELL, DIRECTOR OF ADVOCACY, THE ARC OF NORTHERN VIRGINIA Your loved one has an intellectual and/or developmental disability for which he or she needs and deserves support services. To receive those services, he or she is going to need something called a Waiver. If you’re wondering what exactly a Waiver is, how you go about getting one, and why, for Pete’s sake, it’s called a Waiver, read on. Lucy Beadnell, Director Advocacy at the Arc of Northern Virginia, explains it all. LIFESTYLE: WHAT IS A WAIVER?

L: SO, THE PERSON WITH THE DISABILITY APPLIES, IS APPROVED, WAITS, AND ULTIMATELY GETS A WAIVER. WHAT KINDS OF SERVICES COME WITH IT?

LUCY BEADNELL: A Waiver is a long-term support system for someone who will have long-term care needs. Once you’re awarded a Waiver, you will have access to a menu of services offered by your Waiver.

LB: Frequently used services include attendants who work one on one with the person with a disability, respite care so parents can have a break from care provision, group home supports where a person with a disability lives in a home shared by other people with disabilities,

L: YOU SAID THAT A WAIVER IS “AWARDED.” THERE’S AN APPLICATION PROCESS? LB: Yes, and a waiting list, generally.

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long term employment or meaningful day services, assistive technology, environmental modifications, nursing, and more. These services are offered at no or very low cost. L: THEN WHO PAYS FOR THEM? LB: Waivers are funded by Medicaid and are often called Medicaid Waivers. The person with a disability must qualify for long-term care Medicaid to use a Waiver. As of 2019, this means that the person

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with a disability cannot have more than $2,000 in assets in their name (no cap if they’re under 18 years old), unless those assets are in a Special Needs Trust or ABLE Account, and they cannot earn more than $2,313 per month.

Developmental Disabilities Waiver Contacts

L: I’M CONFUSED. WHAT COMES FIRST, MEDICAID OR A WAIVER? LB: First you get a Waiver and then you can get long-term Medicaid. You can’t even apply for long-term Medicaid until you get a waiver. L: TELL ME MORE ABOUT WHO BENEFITS FROM A WAIVER. LB: People who need assistance with

taking care of themselves, managing their environment, or maintaining a job because of a disability should consider Waivers. I recommend them for people with the full range of disabilities. If your disability is more significant, you’ll use more services and if you have fewer needs, you’ll use less. L: SO, ANYONE WITH A DEVELOPMENTAL DISABILITY SHOULD APPLY? LB: Yes. Even though some Waivers have

waiting lists, if you qualify for a Waiver, you will eventually receive services. As you grow and change, you can use more or fewer Waiver services to meet your needs. The Waiver should grow with you over time and provide the supports you need to be as independent as possible in your community. Also, as a result of a 2012 Department of Justice settlement agreement with Virginia, if you’re on the waiting list for either an ID or DD Waiver, you can apply for up to $1,000 each year to purchase supports you need to be independent and safe. This is called the Individual and Family Supports Program. L: HOW MANY KINDS OF WAIVERS ARE THERE? LB: Virginia has several Waivers. The

three most commonly used by people with intellectual and developmental disabilities are all broadly called Developmental Disability Waivers. The specific names are the Community Living Waiver, the Family and Individual Supports Waiver, and the Building Independence Waiver. Sometimes people with disabilities and medical support needs also use the Commonwealth Coordinated Care (CCC) Plus Waiver.

{ APRIL 2019 |

L: I’VE DECIDED TO APPLY. WHAT DO I DO FIRST? LB: First you consider your specific situation. For example, let’s say you have a diagnosed developmental disability that started before age 22. If this is the case, you should apply for the Developmental Disabilities Waivers. This is done through your county’s Community Services Board, who will assess you using the VIDES survey to test functional eligibility. You’ll also be asked questions to assess your urgency of need. If you qualify, you will be put on a waiting list. Of course, the more urgent your situation, the sooner you will receive a Waiver. You will be given one of the three developmental disability Waivers based upon the type of services you need.

On the other hand, if you have a disability and a medical nursing need, you should apply for the Commonwealth Coordinated Care Plus (CCC+) Waiver, too. This Waiver has limited services, but no waiting time, so you could use it while waiting on a more robust Developmental Disability Waiver. You would apply through either your county’s Department of Health or Department of Social Services, who will assess you using the Uniform Assessment Instrument (UAI). If you qualify, you’ll start what’s called the intake process, and your services will begin in a few months. At this point, you may also apply for the Developmental Disabilities Waiver. L: JUST ONE LAST QUESTION. WHY IS IT CALLED A WAIVER? LB: The Federal Medicaid system has a lot of rules. If a state wants an exception to any of those rules, they request special permission to do that. That permission is called a "Waiver." In this case, the term Waiver indicates that Virginia got approval to offer additional Medicaid services (i.e., long term care supports) to people with developmental disabilities. These are services that other people with Virginia Medicaid cannot get. ❖

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For residents of Fauquier, Rappahannock, Culpeper, Madison and Orange: Rappahannock Rapidan Community Services 540-825-3100 For residents of Prince William County, Manassas and Manassas Park: Prince William County Community Services 703-7927800 or 703-792-4900

CCC Plus Waiver Contacts Fauquier County: For those under 18 call the Department of Health at 540-347-6400. For those 18+ call the Department of Social Services at 540-422-8400 Rappahannock County 540 675-3313 Culpeper County 540-727-0372 Madison County 540-948-5521 Orange County 540-672-1155 Prince William County, Manassas and Manassas Park 703-792-7500 For more information, visit thearcofnova.org/programs/ waivers/ To watch a recorded webinar that walks you through Waivers from start to finish, visit youtube.com/ user/VideosatTheArcofNoVA Virginia Waiver Assistance Hotline 1-844-603-9248

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special needs awareness & resources issue BY KARA THORPE

Can a dog enhance the life of a special needs child? The answer is a definite “maybe”

Connor with Foster, one of his family’s dogs who he has worked with in dog shows.

BY KAREN PEAK

ne of the hardest things for a parent to hear is that their child is not “perfect.” That something is not “right.” I have been there, done that, and have multiple t-shirts. My oldest child, Connor, is autism spectrum. He was diagnosed before entering preschool. Immediately we started with intervention and testing. By elementary school, we had what we needed in place at home and in school. Since the 1970s, researchers have known autism is genetic, but the genetics are complex. At this time autism is still diagnosed through behaviors. This means other things may be mistaken for it. It is thought up to 50% of children with the 22q11.2 deletion syndrome are first diagnosed as autistic. Things causing a child to look like he is ignoring you may be misdiagnosed as autism. Autism covers a wide spectrum. Autism affects everyone differently. In 2010, Connor was highlighted on the Shetland Sheepdog episode of Animal

Planet’s Dogs 101. A friend of mine put me in contact with the producers who were looking for a human-interest story. Connor was working with our dog Foster in UKC dog shows and agility classes to help improve his coordination, communication and observational skills. The producers decided Connor and Foster were just what they needed. Since then, I have gotten many contacts from parents needing guidance

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{ APRIL 2019 |

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Check out Connor’s episode of Dogs 101 at: bit.ly/2OdP0Oq

about their autistic children and dogs. One family’s pediatrician recommended a large dog as an outlet for their child’s behaviors. Luckily the mother sought my opinion as a dog trainer and the parent of a special needs child. I learned her child had frequent, violent outbursts. It was not safe to get a dog at that point. Another mother wanted to get a dog, but her child needed more work before

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RIGHT: Connor and Foster in 2010, shooting the Shetland Sheepdog episode of Animal Planet’s Dogs 101. BELOW: Connor and Sarah, a high school freshman who is involved with various dog sports and volunteers in an elementary school autism class several days a week, surrounded by Ravyn, Foster, Splash, and Uhura.

a dog could be introduced. My daughter, this child’s therapy team, myself and one of my dogs worked together to help this child learn how to interact in a safer manner with dogs. After about a year, Mom decided they were ready to add a carefully chosen dog to the house. The key words here are “carefully chosen.” There is no perfect dog for life with any special needs child. If you are considering bringing in a dog to try and enhance the life of your child, I recommend talking to trainers familiar with special needs children and pets. There are many of us in NoVA willing to discuss this topic. Roni Campbell of Walking with a Friend (on Facebook at @walkingwithafriend) and Laura Sharkey of WOOFS! (on Facebook at @woofsdogtraining) are two others you can contact for guidance. Be honest about what is going on and understand if the answer is “I would not recommend a dog at this time.” What you see when you watch Connor and Foster on Dogs 101 reruns was the result of many factors. Before becoming a parent, I had 16 years of various dog-related work, including 6 years of pet therapy experience and three years volunteering at a behaviorist’s facility. One of my first jobs after high school was with cognitively impaired adults of various ages. Connor had an early diagnosis and intervention. And finally what you see is how autism affected Connor as an individual. There are no magic

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“In many situations, a dog can enhance the life of a special needs child. However, in the wrong ones, things could turn out badly.” wands, essential oils or mystical powers added to a puppy that will suddenly make everything turn out like a Hallmark Channel movie. It is work and dedication. What do I want you to take away from this? In many situations, a dog can enhance the life of a special needs child. However, in the wrong ones, things could turn out badly. Careful choice of the dog and reasonable expectations for the dog and the child are important. Early intervention once concerns are raised with your child is a must. Expecting a dog to tolerate anything a child can do is not fair and could result in problems. However, careful work, understanding and reasonable expectations increase the chance of a good outcome. ❖ ABOUT THE AUTHOR: Karen Peak owns West Wind Dog Training and The Safe Kids/Safe Dogs Project in Prince William County. She shares her life with her husband of 26 years, her two children, multiple dogs and cats.

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Catching up with Connor: Today, Connor is a college sophomore studying chemistry and secondary education. He lives on campus, drives, is involved with various clubs, and has volunteered or worked for Prince William County Schools and Kings Dominion. In tenth grade, as part of the IBMYP program, Connor did a personal project on the topic of autism, pets and technology. The website may be found at: ibmypautismproject.com.

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