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.



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.

Just to catch you up on NSVAR News...

I know its been a while since I have posted a blog. Nothing has really happened since my meeting with Dr. Devine and Sidnee' Dallas from the Department of Health. I'm going to start pushing the issue again this week.

I'll tell you what has frustrated me, though... I had contacted all the local news agencies at the beginning of this fight and the response was mixed. Hattie Cheek at TV3 Winchester, Hayley Mason at WHAG News and Kim Walter at The Northern Virginia Daily really took interest and have done a wonderful job keeping the issue of the Child Development Clinic in the news. They truly care for the children and families in our area who are impacted by the closing. I also will be working with Dan McDermott at the Frederick County Report. to get our story out to even more people!

The Winchester Star... thats another story. Rebecca Layne had interviewed me at the very beginning and put a small article in the paper. They havent wanted to touch it since. We have made great strides in this fight! A petition with almost 7,000 signatures! The backing of a state senator! I emailed and called to ask why they havent been covering it since... the response I got was basically to call them when something big happens. Really? Closing the CDC is the BIG and BAD thing we are fighting to prevent! I would hope that a community news outlet would take some initiative and work FOR their community!

Its disappointing, to say the least.

On the opposite side of that coin, I have been honored to know and become friends with some amazing people in our community as a result of this struggle as well as strengthen my friendships with others! I think I have become a better person during all this. I've had my head so deep into NSVAR and the CDC that maybe I haven't shown the appropriate amount of appreciation. "Godmother", we truly love ya! You are our family now! Shelley D., we are so proud to know you better and consider you our close friend! Your support and willingness to speak out with me for the CDC has been so wonderful! Sharon H. We are glad to know you, glad to fight alongside you for the CDC and I'm especially glad to know that your little guy got what he needed! I look forward to our growing friendship! Senator Vogel, I hope I'm not overstepping my bounds by calling you a friend... but your support has been invaluable! It gives weight and credibility to what we are fighting for. I value and appreciate you! (Almost called you just "Jill" on the phone last time... no disrespect intended madam Senator!)

Oh! Hey! We have had some car decals made with the NSVAR logo! Want to help spread the word?

My van rocking the NSVAR goodness!

Pretty cool, huh? They were made by Alyson at http://www.ososplendid.com/ and they are beautiful! (Check her site out... A lot of really cool and creative gift ideas to be found there!)
They are $7.00 each. That covers my cost to have them made, and whatever postage I need to send them out. I can mail them anywhere in the US. You can reach me at nsvar.org@gmail.com , www.nsvar.org , www.facebook.com/nsvar or www.twitter.com/nsvar if you are interested in getting one.

Things are looking up!

Remember MY LAST POST ??? Well... Doctor Charles Devine, Director of the Lord Fairfax Health District, called me today and I am meeting him tomorrow afternoon!!!!

From what I gather by the letter in my previous blog and what he said to me, I am being directly involved in the decision making process!

I have some ideas... And I plan to do all I can to keep the CDC services local. This will involve me, people in our area who are willing to participate in the "Brainstorm" and people from the Department of Health in Richmond.

I asked in my last blog and I am asking you now more than ever... Please give me any and all ideas you may have about how we can keep the CDC in our area!!! No idea is too far fetched!

PLEASE HELP ME HELP THE CHILDREN IN OUR AREA WHO NEED THE CDC!!!

I can be reached at:

www.nsvar.org

www.facebook.com/nsvar

www.twitter.com/nsvar

or here... just leave a comment at the bottom of this blog post!

Help... and a lack thereof

I've been plugging away at this fight for the CDC. I've spoken to Senator Jill Vogel on several occasions about it and I've also been in contact with Hattie Cheek from TV3 Winchester.

I sometimes wonder what I should be doing now... I emailed the VDH Commissioner, as well as the director of Family Health Services. Twice. They haven't responded to me yet. I'm working on that one...(wink wink)

I received a short letter from Representative Frank Wolf. Click it to view a larger image

 

No help. Kinda disappointing, isn't it?

Well... I did kinda get lucky last friday. I called the office of Family Health Services and fully expected to get Dr. Laurie Kalanges assistant or secretary. A man answered and I asked to speak to Dr. Kalanges. He told me that he did not know how to transfer calls, so he gave me the number to her desk!

Here it is:

Dr. Laurie Kalanges

Director of Family Health Services

Virginia Department of Health

(804) 864-7170

Call early, call often!

I REALLY NEED YOUR HELP. I can only do so much by myself. I am begging you to pick up the phone and tell Dr. Kalanges how important the CDC is to you, your children, your friends children and the community!

I see why the budget cuts were made!

READ THIS ARTICLE

Look 16 lines down in the article...

Cynthia Romero, Commissioner of the Virginia Department of Health is making...

$181,500.00 a year!!!

No wonder they needed to make budget cuts!!!

Ladies and gentlemen, your children will need to suffer so this state employee can buy another Mercedes!

Wow...

Just wow.

Last Fridays WHAG News spot

For some reason, WHAG did not post the video from the news story... Here's the transcript of the story:

BOYCE, VA - Jack Starry and his wife Mary work around the clock to care for their son JT, who has autism. He works just as hard in his fight to keep the state from closing the Winchester Child Development Clinic for good. 

"Why was there no other fat in their budget and they decided to go for the Child Development Clinic," Starry questions.

Starry's petition against the closing has gained more than 6,800 signatures. The Virginia Department of Health has responded and they are standing behind their decision.

"This statement here does not address any of the concerns that we put forth on the petition," Starry says of the VDH's response.

In a statement to WHAG, Dr. Lauri Kalanges, the director of family health services for the Virginia Department of Health says that tight funding contributed to the decision to close the Winchester office. She says the VDH found that contractors were able to see more children than local CDC's partly because they have more "flexibility in staffing and in tailoring the evaluation to the specific needs of each child." After evaluating different models she says the VDH "determined that the program goals of serving as many children as possible and identifying children with developmental delays as young as possible would be best served by transitioning to a contractor-based model."  

"I'm going to be contacting her directly, Dr. Lauri Kalanges, and figure out what can be done," Starry says. "How we can change this? I'm going to ask her about the logistics of absorbing so many CDC's to be seen at JMU. How they're going to be able to see more children, taking on so many different case loads from so many different areas? When you take more case loads, you're bogging yourself down. You're not opening yourself to be more productive." 

Starry also has the support of local state Senator Jill Vogel, (R-27th district). She says in a phone interview nothing is more important to her than keeping the local CDC open. 

"For those who would argue that this is a resource matter and moving it geographically, that is not undermining people's access to the services, that couldn't be farther from the truth," Vogel says. "If you make it so that it is not accessible, many many families won't be able to travel." 

Vogel says she plans to fight with Starry to change the decision and keep services local. 

_______________________________________________________________________

If you got the chance to read my last blog, you will see my response to the Department of Health... And I STILL HAVEN'T GOTTEN A RESPONSE!!!

My response to the VDH

In my previous blog post, I uploaded the response I got from the Virginia Department of Health. <--- click to see it.

Below is my response. Along with the addressees mentioned below, it was also sent to 3 different news outlets, Senator Jill Vogel and Delegate Beverly Sherwood.

Tell me what you think in the comments section below this blog post...



Greetings Dr. Kalanges , Mrs. Dallas and Commissioner Romero,

I received the response to the petition with over 5800 signatures at the time of printing (currently over 6800) that was sent to you recently. To be honest, I was disappointed that NONE of the issues mentioned in the petition cover letter were addressed. I was hoping for some clarity on the matter.

1) "In conducting an evaluation of our services, we determined that virtually all of the children seen have some form of insurance; Medicaid, FAMIS, or commercial insurance."

That is a statement which has no bearing to the issues presented. Agreed, alot of the families have some sort of coverage for their children... that's how they got to the CDC in the first place! Medicaid covered the testing/evaluation for my sons DD Waiver eval. It doesn't change the fact that families needing these services in the future will need to A) Take 3 entire days off of work to make the trips to Harrisonburg for the 3 needed visits. Gas expense, loss of 3 days wages, specialized child care for TWO of the three days are all to be included in that concern. B) The potential trauma to the patient in question. A lengthy trip down, 6 hours (conservatively) of evaluation and then a lengthy trip back. Uncomfortable and exhausting for a NT (neurotypical) person. TRAUMATIC for people with special needs.

2) "We also found that our contractors were seeing significantly more children, when compared with the local health department Child Development Evaluation model."

Less centers + absorption of multiple CDCs to those already overburdened centers = longer waiting lists and even more so overburdened centers. How can this be more efficient? More people in less centers doesn't make sense at all from an efficiency standpoint.

3) "As the funding for programs has tightened, VDH has been identifying opportunities to continue to meet pediatric developmental needs in the most efficient and cost-effective manner."

The most pressing question about that statement is this: It is known that the VDH was told to make budget cuts, but not HOW and WHERE to make such cuts. Why did you go for special needs children? What was passed over in favor of the CDCs? I'm hoping that your budget for the past few years is a matter of public record, because I would most certainly like to see it. Additionally, the families which have no choice but to find a way down to JMU may be utilizing Logisticare. So... medicaid will be billing the VDH (your budget) to either A) pay for gas OR B) pay for gas AND the driver provided thru Logisticare AND maintenance on the vehicles. And C) potentially pay for lodging. Not to mention your "private contractors" who almost certainly dont fall under the state employee pay scale. I'd be willing to bet that they earn a bit more than state employees. Apparently, what you are "saving in the front end, you are paying for in the back end"

So, here is what closing the CDC will REALLY accomplish: Blue collar families who CAN'T afford the time-off/gas/specialized child care will NOT BE ABLE go to Harrisonburg to have their children evaluated. These children will not be able to receive the essential services needed to help them grow to be capable / well adjusted / productive citizens of this state. You are potentially ruining the future for numerous children and adults in the state of Virginia, and the lives of their families as well.

Please keep in mind that these closures impact A LOT of people. Intellectually Disabled as well as Developmentally Disabled. ALL wonderful people and ALL deserving of an opportunity to improve/grow/participate in their communities. Closing the CDC will keep that from happening for many.

The good part is that YOU have the power and the opportunity to fix that. I'm certain that you made these initial changes, not knowing the adverse effect it would have upon the population. And I'm doubly certain you would NEVER want to negatively impact special needs children and adults. Am I correct? I sincerely hope so.

I appreciate your time and eagerly await your response!

Friends and Enemies...

While I was in the hospital a few days ago, I was contacted by WHAG reporter Hayley Mason. She had contacted the Virginia Department of Health and told them that she wanted a response to the petition I had sent to them. She informed them that wether they responded or not, she would do the story. The body of that response is on my previous blog <--- click to read it. She also came to my home and got my response to the VDH statement... Click to read the WHAG news story

Today, I received my response from them:

CLICK TO ENLARGE

junk, huh? Doesn't even come close to addressing the issues laid out in the petition! They will be hearing from me, you can take that to the bank! Want to speak out with me??? The contact info at the bottom of that letter is Sidnee Dallas, 804-864-7716 and Sidnee.Dallas@vdh.virginia.gov

On the other end of that spectrum... Delegate Beverly Sherwood sent a letter thanking me for personally delivering the petition, and enclosed a copy of a letter she sent to the Commissioner of the VDH. 

How's that for awesome???

If you read the WHAG news story I linked at the top of this blog, you will see that Senator Jill Vogel chimed in, defending the CDC and throwing her hat into the ring to fight for us!

If you are having difficulty reading these letters, you can find them in the photo albums on NSVARs Facebook Page

I am very thankful for the support shown by Senator Vogel and Delegate Sherwood! And I certainly hope the families affected by the CDC closure are as well! 

GOOD DEEDS DO NOT GO UN-NOTICED!!!