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Posted May 24, 2013 | Leave a comment
Parents fight to keep local Child Development Clinic open
By Kim Walter
Parents of local children with intellectual and developmental disabilities are fighting the state Department of Health's decision to close the Child Development Clinic in Winchester.
Several weeks ago, Virginia announced that a number of community facilities would close in order to provide services to more children in a timelier manner. Instead of using state employees, private contractors would take on the role of providing testing and evaluations for children with disabilities.
The services that were offered in Winchester still will be available, but families in the Lord Fairfax Health District now will have to go to Harrisonburg to receive them.
Boyce resident Jack Starry said his 8-year-old son, who has been diagnosed with Asperger's syndrome, went through testing at the Winchester clinic last summer. The whole process took three appointments over a three-month period, and while that may seem like a while, Starry said it's nothing compared to could happen if the clinic closes at the end of June.
"The first appointment was just an hour or two, and my wife was able to take our son for the six to eight hours of training during the second appointment. I went for the third appointment where we get the results, but I never had to miss a day of work," he said during a recent interview. "And for parents working the nine-to-five jobs, that's a big deal."
The system worked well for him and his son, J.T. However, children who were scheduled for testing after May 24 are now being redirected to the facility at James Madison University in Harrisonburg.
For parents like Shelley Drago, that creates a huge problem.
Drago, who lives in Stephens City, needs her 6-year-old son Camdyn to go in for an IQ test so that he can receive a developmental disability waiver. The evaluation is the final piece of the puzzle for Camdyn, who also has Asperger's syndrome.
"We started the process to get the waiver a long time ago, and we were on track to get everything we needed," Drago said. "And then, all the sudden, it's like boom. 'Sorry, we're closing.'"
Now, Drago has to wait until July 1 until she can call the Harrisonburg facility about scheduling an appointment. She said even if she is able to speak with someone right away, the appointment might have to wait until a year and a half from the time it's scheduled.
"We were so close, and now Camdyn might have to wait another 18 months for this one test," she said. "And after that, it could take another seven years to get that waiver. This is ridiculous."
Drago has other factors to take into consideration even if Camdyn is able to be evaluated soon.
"I would love for someone to ride along with us on a long car ride," she said.
As a single, working mom, Drago will have to take three days off of work for the pre-testing meeting, day of evaluations, and results appointment. She's said she has previously taken Camdyn for similar appointments to a children's facility in Charlottesville.
After an hour in the car, she said her son would start to get antsy.
"He starts to say he's hurting, and he can't be in the car anymore and we have to stop," she said. "Sometimes it's a quick stop, but sometimes it's not. Either way, I have to calm him down."
The testing process often results in a whole other meltdown, Drago said.
"When Camdyn decides he's had enough, he's done," she said. "The testing is physically, psychologically and mentally draining ... and that's for any kid."
One of Camdyn's tests had to end early when he decided "he was done" and refused to get off the floor until he could go home. Drago said because he wasn't able to finish the evaluation, his IQ results were lower than they should have been.
"It just makes me wonder how affective the testing will be for these kids who can't handle the 78-mile trip and another six to eight hours of evaluations," she said. "You know, I'll have to use vacation days to take Camdyn to Harrisonburg, and let me tell you, that will not be a vacation. It's a mental meltdown for both of us."
Two weeks ago, Starry decided to start a petition in hopes of either keeping the local CDC open, or at least keeping services in the area. While it gained signatures slowly at first, there are now more than 6,700 names backing the petition.
"This isn't just for the autism community," Starry said. "We were just a jumping off point. This is for all the kids in this area with a disability."
Starry said he was frustrated to learn that the Virginia Department of Health was asked to reduce its budget, but wasn't given a specific area to cut from.
"It sickens me that they went for the kids," he said. "How is this helping anyone? The Harrisonburg folks are already behind on their caseload, and they aren't just absorbing our region ... how can you tell me that this will all result in helping more kids?"
According to Starry, the Winchester CDC offered a more personal touch than he thinks the Harrisonburg facility would be able to give. During his son's evaluation process, Winchester employees met with J.T.'s teachers at his elementary school.
"It's such an important personal touch to be hand in hand with the people who are working with our children," he said. "And now we're losing all that to be some number on a list that takes a year and a half to get to the top of."
Recently, Starry distributed seven copies of the petition to state health officials, the governor and local representatives. One of those representatives was State Sen. Jill Vogel, and Starry said he was surprised by her reaction when he explained his concerns.
"She's actually been fighting to get autism covered under Virginia health insurance," he said. "She told me that she was going to fight to keep the services in this town, and I'm going to hold her to it."
Starry and Drego describe themselves as "fighters" who aren't going to stop anytime soon.
"We will do whatever it takes to get the best care possible for our children," Drego said. "I was devastated to hear the news about the clinic, but I know I'm not the only one. This impacts more people, more families and more children than you can imagine."
To sign the petition and get updates on the issue, go to www.NSVAR.org.
Contact staff writer Kim Walter at 540-465-5137 ext. 191, or email@example.com
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