Politics?

I don't like politics. I never have. I don't know the difference between right wing and left wing, nor do I truly understand liberal or conservative. For the most part, they're a bunch of people making bad decisions with my money! If I don't like someone in political office, it's certainly not because of their party alignment. It's probably because I think they are not looking out for the best interests of their constituents.

That being said... let's talk about politicians.

Senator Jill Vogel: At the very beginning of our fight for the child development clinic, I presented her with a petition. She sat me down, listened to everything I had to say and assured me she would help. She gave me her business card and wrote her personal cell phone number on the back. She has been as good as her word! The Senator and her office personnel have been an invaluable resource! Everytime I have called her, she has gotten back to me quickly. She has taken time out of her busy schedule to have long drawn out conversations with me. I am eternally grateful, and she will always have my support.

Candidate Larry Yates: I had the pleasure of meeting this gentleman at one of our CDC meetings with the state health department. He had approached us and wanted to help. He has shown a concern for our disabled community and has made himself accessible for advice and assistance in our fight for the child development clinic. He encouraged me to take the opportunity to speak at a local forum he hosted for the disability community. He seems to be a very down to earth gentleman with genuine care and concern for the community.

Candidate Mark Berg: This gentleman is running against Larry Yates for the 29th District Delegate seat. I have attempted to contact him on several occasions. I took the time to explain our work to keep services local for intellectually and developmentally disabled children and adults. I had invited him to our meetings as well. Mr. Berg sent a response to me which didn't even address my original email. When I posted on his Facebook page about my disappointment, the post was quickly removed. I was soon contacted by one of his handlers who promised me a quick response by the candidate himself. As of yet, I have not heard a thing. Another gentleman posted his concerns as well, only to have that removed. Apparently he doesn't seem to realize that 1 in 50 children have autism... and that child has two parents who most likely vote. One in 25 parents in the 29th district are influenced to vote by his actions. His inactivity is going to cause them to vote for someone else.

I have absolutely no idea what political affiliation these three people have... I don't know if they are Republican, Democrat or Independent.

And I don't care.

The only Tea Party I have ever heard of occurred in Boston a long long time ago.

But I DO know who has shown concern and care for our community. I have seen who is willing to roll up their sleeves and fight for our children. That's what matters. Our children today are the leaders of tomorrow. How we lead them today influences how they lead us in the future!

What kind of leader do you want?

The politically correct filter

I received a letter from the health department today. It was a letter to tell me to expect a letter. I'm guessing I must have caught them off guard. If you read my previous post you will see my letter to them asking why they've been dragging their feet in their communications with us.

So, the letter I'm about to post below must be a placeholder for me while they run their actual response through their politically correct filter...

Please feel free to comment let me know what you think
.......................................................

This is in reply to your recent email to the Virginia Department of Health regarding child development services in the Winchester area.  Thank you for contacting us to express your concerns.

 

We are currently researching the questions that you raised in your email and will be in touch with you shortly with a more specific response. 

 

Should you have questions in the meantime, please contact Sidnee Dallas, Program Administrator of the VDH Children with Special Health Care Needs Program with the Division of Child and Family Health.  You can reach her by telephone at 804.864.7716, or by email at Sidnee.Dallas@vdh.virginia.gov.

 

Cynthia C. Romero, MD, FAAFP

State Health Commissioner

109 Governor Street

Richmond, VA 23219

Another letter to Richmond...

I've emailed the Virginia Department of Health YET AGAIN. They have been lax in their openness with information. I believe they are of the idea that as long as they can drag their feet with us, the less they need to do. They probably are hoping we will go away...

NOT GONNA HAPPEN

Here's the email...

Greetings,

I am emailing to communicate with you about our progress and open communication with the JMU staff. We have had a very productive open dialog with the staff at Harrisonburg. They have been so very helpful and informative about the possibilities of a satellite office in the Northern Shenandoah Valley. They have also voiced concerns about the lack of consistent communication on your side of the equation. "It's almost like the right hand doesn't know what the left is doing," Zingraff said. "It doesn't help that all of us have talked with several key players, but never at the same time or about the same issue." For example: the files still at the CDC in Winchester, which we had mentioned to you on several occasions, WERE NOT refused by the JMU staff as you had informed us. They had actually prepared space for those very files!

We have been in constant communication with your office about all aspects of our work toward serving the special needs community in our area, but your responses have been slow and lacking any true information. Doctor Devine has constantly been in the know as far as our progress is concerned.

When can we expect an answer as to how the state can help the special needs community in our area? The longer the personnel in your office remains inactive, the greater the number of children in our area aren't served. Your inactivity is negatively impacting a growing number of children.

Please open the lines of communication with us. And supply us with facts, ideas and answers.

Jack Starry
540-692-6136
www.nsvar.org
facebook.com/nsvar
twitter.com/nsvar

Musical Chairs and more unwashed hands

Our meeting with JMU was a lengthy and fruitful one! We were very pleased to have Rhonda Zingraff, director of JMU's Institute for Innovation in Health and Human Services, and Kim Hartzler-Weakley, director of the Office on Children and Youth join us! First and foremost, I want to thank them for their candidness and openness. I hope we can continue to enjoy such an open dialog with them.

Leading up to the meeting, our local TV3 Winchester friend and reporter Hattie Cheek aired a story about the CDC and our fight to keep services local. Hattie has been a great supporter of our cause and has enabled us to keep our fight in the public eye. Her news story can be found here: LOCAL WOMAN FINDS SERVICES SHE NEEDS AND HELPS TO KEEP THEM LOCAL

Thanks Hattie!

At the meeting, we were joined by Kim Walter from the Northern Virginia Daily newspaper. She took copious notes during the meeting and the article was published today! You can read it here: JMU CLINIC SUPPORTS IDEA OF CHILDRENS SERVICES SATELLITE

Its a very well written article and clearly sums up our meeting! We value and appreciate Kim for her time and attention to the matter! Thank you, Kim!

Now... on to the meeting.

One of the things we had been asking for was an explanation as to where the money went. We went forward with a Freedom Of Information Act request, and this non-answer is what we got:

Kinda looks like a case of "Hide The Money" doesn't it?

 

 

As I am sure you read in the newspaper article, the JMU CDC took on a lot more than just our catchment area. Their service area is a long laundry list of cities and counties.  

 

They have had meetings with the VDH just as we have, and are running into the same problem.

 

Musical Chairs.

 

Almost every time we have had a meeting with VDH, its been with different people. Their office has been a revolving door as far as their personnel are concerned. Every time we meet, we find ourselves having to re-hash all the information... all over again. Seems excessively counterproductive, doesn't it? The folks at JMU have had the EXACT SAME PROBLEM!!!

 

How are we supposed to accomplish anything when we keep having to backtrack? On top of that, we aren't getting answers from the VDH. We asked to be part of the conference call taking place this Friday at 10AM. Dr. Charles Devine informed us that we probably won't be included.

 

Why? What does the state have to hide? Is there something they don't want us to hear? I would hope that they had the best interest of our children in mind... but I'm not getting that warm and squishy feeling from them. At all.

 

JMU wants answers just as much as we do! You can only take so much of "That's a good question, we will have to get back to you on that" before you've had enough.

 

YOU'VE HEARD OUR QUESTIONS AND HAVE HAD AMPLE TIME TO "GET BACK TO US ON THAT" How about those answers?

 

To quote Rhonda Zingraff "It's almost like the right hand doesn't know what the left is doing," Zingraff said. "It doesn't help that all of us have talked with several key players, but never at the same time or about the same issue."

 

Musical Chairs.

 

OK people. The music has stopped. Let's everyone have a seat now and start paying attention to what really matters. OUR CHILDREN.

 

It's time the VDH stopped playing games with us, with JMU and with the welfare and future of OUR children.



Life as an undiagnosed Aspie

I had always known that I was never quite like everybody else. Until my son was diagnosed I could never put my finger on it. I'm certainly not riding on the coattails of his diagnosis, because I had seen similarities long before he was diagnosed. Before military school, I had found it very difficult to look people in the eyes... physically painful even. I've always had very narrow obsessions, they would last for several weeks or months then I would drop them completely. I've always been very musically inclined and sarcasm is my coping mechanism.

At a local support group I had the pleasure of listening to a college professor with Aspergers talk about the syndrome and it was like he was explaining me perfectly. Everybody who knows me and knows about it can see the connection easily. I tend to think of myself as above average intelligence. I am flattered that most of my friends say I'm the smartest person they have ever met. My grades at school may not have reflected this, but I think I am a master of useless information! If you don't need to know it, I probably have an answer for you!

I was sent to military school from 6th grade until I graduated high school. I am certain that the structure helped me become the person I am now. Aspies thrive on routine, and the rigid structure of a military school catered to that need for me.

I used to have short silent outbursts where it would feel like my entire body was wound up like a rubber band twisted into knots until its released and unwound quickly all at once. I would have nervous ticks and noises I would make when I got stressed out. Summers with my stepmother amplified those issues because her and I always had a very contentious relationship. I apparently was the ball and chain she didn't want in the house, so I generally got the short end of the stick. that's one hell of a way to turn a child into a ball of nerves!

Looking people in the eye now is still painful, but it is a learned skill from years of having no choice but to do so. The one thing I still have a lot of trouble dealing with its changes in my routine. I absolutely love when family comes to stay at my house, but I admit that it does throw me off. I wouldn't have it any other way though, because it's great to spend time with the ones you love.

I tend to blurt things out in the conversation that arent quite relevant to the subject, and then feel like an idiot for doing so shortly after. My social skills generally fall into the sucky range!  My close friends are used to this and just ignore me! My best friends are all off center somehow someway, but that's exactly the reason I love them so much.

If it wasn't for military school, I would be a complete and total mess right now. as much as I hated it while I was there, I am so glad I went now.

One hand washing the other?

Tonight the Northern Shenandoah Valley Save Our Services coalition met at the former CDC offices to discuss with the State Health Department representatives the ways we can work together to get the funding back to this area for a local Child Development Clinic.

We were very pleased with the turnout on our side of the table. The NSVSOS committee was joined by:

• Concerned Citizens and Parents
• The Winchester CDC Personnel
• Frederick County Department of Social Services
• Frederick County School Board
• Lord Fairfax Health District

We were especially fortunate to have Senator Jill Vogels legislative assistant Tricia Stiles with us as well as Candidate for the 29th District Delegate seat Larry Yates .

Everyone in our group brought up some very good points tonight! Questions were posed to the staff in Richmond, but most (if not all) went unanswered.

1. What is JMUs capacity for seeing and evaluating children at their facility? How many per month are they able to serve?
2. What is the current backlog of appointments?
3. What is the expected wait for children on that backlog?
4. Because of their increased caseload, how has the budget at JMU increased? How much of the money that was originally earmarked for the Winchester CDC did they end up with?
5. Being as JMU has refused the patient files that are housed at the Winchester CDC, what will happen to them? Who will administer these files if there were ever a need for them by the patient/family in question?
6. What do we have to do in order to be involved throughout the year and especially at contract renewal time?
7. What is JMUs transition plan?
8. What is JMU doing to solicit their service to children and providers in this area?
9. How will emergency appointments be handled?

Not one of these questions were answered tonight. Either due to bureaucratic red tape or a lack of preparedness... we were left with questions. Speaking of bureaucratic red tape, a phone call with a request to encourage JMU to communicate had to be run up the chain of command flagpole... at the expense of never calling me back.

As for JMU, our initial attempts to contact the Harrisonburg Clinic were met with less than savory results. I'm not sure why. Thankfully, another representative from JMU contacted NSVSOS Vice Chairman Cassie Phipps Purtlebaugh and extended an olive branch.

I would love to have them drive up from JMU and sit in on all of our future meetings. Its their job, right? They'd surely be paid for it. As a matter of fact, I am publicly requesting their physical presence at the next meetings! I would love to meet them personally and shake their hands! Get to know them, and have them get to know the parents of children affected by the loss of our CDC. I think it would be an eye opening experience for everybody! Of course, if the trip up here is too inconvenient, I'd be happy with a conference call.
Candidate Larry Yates brought up something interesting... The Virginia State Rural Health Plan . This plan, which the State Health Department has a hand in, has recommendations from their "Access Council":

Access to quality, affordable and accessible health care services is essential and should be an expectation of all rural residents. Access must not be limited solely to primary and acute care, but must include a greater integration of mental/behavioral health, EMS, dental/oral health, telehealth, women’s health services, preventive care and health promotion and education.

 Sounds like a great idea to me! Where does the CDC fit in to that plan? That leads me back to the title of this blog. Kinda seems like one hand isn't washing the other, don't ya think?

One last thing. Ever since our first meeting with the State about the CDC, we have been mentioning their budget and how it would be great to see it. I even asked for it in my email response to Cynthia Romero on June 2nd. So... let me make it crystal clear

I WANT TO SEE THE VIRGINIA STATE HEALTH DEPARTMENT BUDGET FOR THE PAST 3 YEARS

Pretty Please
With sugar on top
;-) (winky face)
Thank You.

A New Organization and a Fresh Perspective!

Tonight was our local meeting for the CDC. I was absolutely amazed by the turnout!!! We were extremely fortunate to have concerned parents as well as important members of the Special Needs Community.

• Frederick County Department of Social Services
• Winchester Child Development Clinic
• Lord Fairfax Health District
• Healthy Families
• Winchester Public Schools
• Lutheran Family Services
• Northern Shenandoah Valley Autism Resource

The community has really come together for a very important goal. Northwestern Community Services www.nwcsb.com has donated space for evaluations to be conducted locally. THANK YOU!!!

We all decided to get officially organized. We have designated ourselves as the Northern Shenandoah Valley Save Our Services organization (NSVSOS). We have a Facebook page up and running (THANKS Sharon Hanks!) at www.facebook.com/nsvsos

I (Jack Starry) was nominated Chairman
Cassie Purtlebaugh is Vice Chairman
Sharon Hanks is Secretary

This is uncharted waters for me... I've always just been a loudmouth. I'm going to have to adhere to a structure, now!

Now... on to the meat of the matter.

What we are working to do is notify all the local service providers in the area about the services being sent to Harrisonburg and have them, en masse, express their genuine concern about the importance of keeping services local. I, along with other concerned parents, will be contacting JMU and inviting them to our meetings. Including them in the process and working closely with them to facilitate the opening of a satellite office here.

Again, the importance is multi faceted. Right now, JMU has about half the monthly caseload scheduled (see my blog titled "Not Half Full, Not Half Empty... Just Half") that the local CDC had. When there is a "no show" (which is WAY MORE probable being as JMU is so far away) JMU isnt able to quickly work another child from our area in. Its a logistical impossibility! That open slot goes to a child close to JMU! So, the children of our area lose out AGAIN. If JMU is going to see children from our area until such time a local office is up and running, they need to continue seeing children at the rate and frequency that the local CDC  had been.

All that being said, our next meeting is Thursday, July 25th at 6PM. We will be meeting at 10 Baker Street (The former CDC offices). We hope to have JMU and The VDH commissioner in attendance (most likely by videoconference). That brings up an interesting point... if the JMU officials were to find it too inconvenient to travel to Winchester for a meeting... it stands to reason why it would be even more difficult for a family with a special needs child to travel down to them... dontcha think?

By the way, NSVAR was on the news tonight about just this very topic! CLICK HERE to see the video!